au soleil levant

Au Revoir

2011-10-09T08:50:00.000-04:00

A message from Soleil's family

Barely one week after her last post, Soleil was admitted to the hospital again because of infections and severe respiratory problems. Despite the best medical care and her incredible determination, Soleil was unable to recover. With unbearable sorrow, we regret to inform her blogger friends that Soleil passed away two weeks ago. Our beloved daughter faced each day with optimism and great courage, and made every moment of her life count. Our hearts are broken as we will forever miss the richness that Soleil brought to our lives each and every day.

A week out

2011-09-07T21:07:00.000-04:00

I've been out of the hospital for a week, and it's been interesting. My balance is definitely off because of the ear infection, and that will supposedly stick around for a few more weeks. I'll.probably be getting a home health aide to help me around and make sure I don't fall. I'm also getting a platelet transfusion every other day, and as a premed, to prevent reactions, they give you benadryl, and that puts me right to sleep. So I've been getting a lot of sleep!

Otherwise, I FINALLY saw Harry Potter 7 Part 2! It was supposed to be a birthday activity, but I didn't get discharged until med afternoon, so we put it on hold. I'm so glad I finally saw it, it was very well done. Not as god as the book, of course, but a good movie adaptation.

And my brother started football season! We were at the game, a home game, so we got to sit in the President's Box because we are members of some sports support club. Yeah, the perks of giving money to Division 2 schools are pretty nice :) My brother played very well and the team won, so it was a good game all around!

Out!

2011-09-01T21:23:00.000-04:00

I was discharged from the hospital yesterday evening. I'm glad to be out. Not a lot of time to write now, but I'll update you on my health stuff later. Hope you're all doing well!

You'll never guess

2011-08-28T21:54:00.000-04:00

I've been in the hospItal since Wednesday with an ear infection! I'm feeling.better I think? I'm having trouble balancing when I stand up and walk around, which I definitely didn't need on top of all of the rest of mobility problems I've been having. Uuuggghhhh. Anyway, That's what's going on here! Hope you all are enjoying the end of summer,

Book reviews

2011-08-20T17:12:00.003-04:00

I love to read and have always been a voracious reader. One of the best parts of not doing anything is that I have a lot of extra time to read! Here are some reviews of books I've read recently.

Major Pettigrew's Last Stand: I really enjoyed this book. I read it about a year ago, as a recommendation from Amazon, and it was an excellent recommendation. It's about a retired major who becomes friends with a Pakistani immigrant and has to confront racism in his small English town. There's also an issue about the inheritance of an antique gun after his brother dies. Highly recommended! The tone is really enjoyable and the characters are well developed.

The Guernsey Literary and Potato Peel Pie Society: This is an epistolary novel about the effects of World War II on the island of Guernsey, which was occupied by the Germans, and a little bit of London too. Letters between Juliet/Izzy, a journalist, and the residents of Guernsey tell the story of the German occupation and how the residents of Guernsey used their literary society and friendship to overcome those hardships. Eventually Juliet/Izzy decides to write a book about Guernsey island and moves there for several months. The characters are
wonderful, the tone is funny, and it reminded me a lot of Jane Austen's writing, which is
good because she's my favorite author :). Highly recommended! The story and characters are really wonderful.

The Georgia Nicholson Diaries: This is a series of ten books by a comedian that are the diary of a teenager, and they are hilarious! I think they are meant to be read by adults who remember being that ridiculous, or who enjoy reading about how ridiculous teenagers can be, but they are also very popular with teenagers, and I don't think they get that. Oh well. Angus, Thongs, and Full-Frontal Snogging is the first book and shares Georgia's search for a sex god boyfriend, and her struggles with her parents and much younger sister. Hilarious, and very good for a light read.

I'll add that I'm really not a fan of dramatic novels and prefer stories that are mostly nice and not bloody or traumatic. My life is tough enough, and I don't need to read things that are unpleasant.

Which is perhaps why I wasn't so much a fan of the novel Faithful Place. This was an Amazon recommendation, and I do like mysteries along the lines of Dan Brown and Agatha Christie, so I thought, why not try this one. It's about a police officer who hasn't had contact with his family for about 20 years when he was supposed to elope with his girlfriend, but she never showed and so he ran away on his own. His girlfriend's suitcase is found, and soon after her body, and he's drawn back into the world of lower class Dublin while trying to solve this case. The story was sort of interesting, but I had it figured out about half way through the book, and the way it was written wasn't terribly interesting. I'll give it a half recommendation, if this is your kind of book.

Remarkable Creatures:. I haven't finished this one yet, but I'm really enjoying it. It's set in the 19th century in Lyme Regis, England (another Austen tie in!) and deals with the relationship between two female fossil hunters. It's set in the first half of the 19th century so evolution hasn't been proposed yet, but these fossil hunters find fossils that don't fit animals that are alive today, so where did they come from? One becomes a very famous fossil hunter, and their friendship and work is played out against the background of 19th century opinions about women working and taking credit for discoveries like these fossils. Highly recommended! Makes me want to read more Tracy Chevalier. I enjoyed The Girl with the Pearl Earring and The Lady and the Unicorn (and seeing the tapestries at the Musee Cluny) so I'll probably add more of her books to my "to read" list.

Last one for today! My cousin was an extra in the movie Flipped, and after seeing the back of her head and finding the movie cute, I decided to read the book, and really liked it. The story is almost exactly the same as it is in the movie. It alternates points of view of the same events as experienced by a boy and a girl who are neighbors. The girl is in love with the boy for years, but he finds her embarrassing and so tries to ignore her. It's about the things she does to impress him and how their relationship changes over the years. Very well written and a very cute story!

Hope you find something here that interests you, and if you have read any of these, tell me what you read and how you liked it!

Other things to do in and around Traverse City

2011-08-14T20:14:00.001-04:00

There are tons of attractions in the Traverse City area, which I'll say is the top left corner of the lower peninsula, or the tip of your left pinky from the back of your hand. There are lots of cute towns with various shopping and eating places, islands to visit, and lots of outdoor activities. For example, there's Sleeping Bear Dunes, a park featuring 400 foot tall sand dunes, Old Mission Peninsula is fun to drive around and has some wineries and historic attractions, and there are five lighthouses in the area to visit. Did you know that Michigan has the most lighthouses of any state? There are lots of cruises you can take in the Grand Traverse Bay, parasailing, you can rent boats, there are lots of golf courses... and there are a few casinos too, if that's your thing. The visitor's bureau has a pretty good website of things to do in the area, but there are of course many more things than they list!

This year we visited Leland and it's Fishtown historic district for the first time. Fishtown has these old, decrepit looking buildings that are what would have been there 100 years ago.

(Not my photo, because I didn't take many this year, but I went here! Lifted from the site above)

Today they're home to some souvenir shops and a couple of food places. An amazing smoked fish store, with fantastic prices because it's fresh and local, and the cheese shop in the photo above with really good cheeses. I really enjoyed the goat gouda. The town itself is very small and very cute with galleries and shops. You can even charter boats and go fishing on Lake Michigan, for those who like to fish!

And of course, the big thing to do anywhere you visit is eat! Since this is the Cherry Capital (Michigan produces 75% of American tart cherries and this is where they are grown) anything cherry is good to eat, and they are everywhere. Dried, covered in yogurt or chocolate, worked into sauces, in pies... there's even the huge National Cherry Festival on the 4th of July weekend. I've already blabbed about the wonderful ice cream at Moomers, so no need to repeat that. Restaurants that I recommend are:

Thai Cafe: I know it sounds ridiculous to recommend a Thai restaurant in northern Michigan, but this is a really good restaurant! The spices are very well done, the flavors are wonderful, I've liked everything I've had from there. And they give you huge portions.

Firefly: a really interesting place because they have large dishes but you can also do a tapas-type dinner and order a bunch of small plates to share. I've been twice with a friend of mine who has had a great time working up north for like five or six summers, and we've done the tapas dinner thing both times. Loved everything! The nachos really stand out in my mind.

North Peak Brewing Company: they do in fact brew their own beer, which I didn't order because I don't really like beer, but my brother did, and he liked some of them. The fish and chips are great, the pretzel crusted walleye is also very good, and the veggie nachos are great too. I love nachos and am quite the critic, so that's a real complement.

Amical: this was a new visit this year and a huge success! Everything was wonderful, and the star was this enormous tomato soup en croute (with pastry on top) - seriously, the soup could have been a dinner all on it's own because it was so big, and it was delicious! I didn't finish it though because I had a whitefish coming for dinner, which was also wonderful.

We also ate at Poppycocks and I thought the food was very good, but they don't take reservations, so we had to wait around for a while, and there was an issue with them not having a lot of vegan options for my sister despite saying they did, but the food we had was good. The sun-dried tomato polenta stack was really tasty, and the salmon and whitefish were both very good.

So, if you go to visit the Traverse City area, there are lots of things to do, and you should visit! In the winter there's skiing, so it's a four season destination. Please do visit, Michigan could use the money!

Pleasanton Bakery and The Village

2011-08-07T22:39:00.000-04:00

One of the best bakeries I've ever been to is the Pleasanton Brick Oven Bakery. Their breads are fantastic! My favorites are the Tomato Parmesan and the Cherry Chocolate, but they only make certain breads on certain days, and we weren't there the Cherry Chocolate day, so I missed out this year! All of their breads are wonderful. I haven't had any of their cookies or other sweet treats, but I'm sure they are good too.

The Pleasanton Bakery

The bakery is located in this place called The Village, or Grand Traverse Commons, which used to be a mental hospital, and the other buildings in the area look like it. The Pleasanton building used to be a fire department building, and this is the rest of it.

It looks a lot less creepy in these photos because it was sunny when I took them, and because I don't have a picture of the front of the building, which is the creepiest looking part. The hospital has been redone and now has shops and restaurants on the bottom floors, but on the top floors they're putting in apartments and offices.

I find this redo of an old mental hospital strange and creepy because mental hospitals were not fun places to be. The patients were usually mistreated and punished for behavior that was beyond their control, and they often lived in very bad conditions. It just makes me a little on edge to be in the building and know how miserable the poor patients must have been.

But luckily the Pleasanton bakery isn't located inside the old hospital, so I have no problem going there to pick up fresh bread!

Wine Tours

2011-08-03T19:47:00.000-04:00

I'm going to start off by telling you guys that my internet issues weren't over the last time I posted! We lost power on Monday night. What are the odds? Luckily it was only out for about five hours, but really! The internet gods must be angry with me, but I love the internet and don't know what I did to hurt their feelings! In any case, hopefully there won't be any more issues with my internet!

Back to my trip up north. The Traverse City area is actually on the same latitude as Bordeaux, so there are several different wineries, but the quality of most of it isn't as good as the stuff from Bordeaux. They do make excellent rieslings though, and since my favorite kind of wine is sweet white wine, I indulged! I'm not as keen on red wine (of course I avoid the wine that's supposed to be good for you!) and the ones up north aren't that good anyway, so I only sampled whites, champagnes (okay, sparkling wines, I know that champagne is technically only from a certain area of France) and a rose or two.

Our first stop was Chateau Chantal, which has my favorite riesling, the Select Harvest Riesling (not sure why it's labelled as Late Harvest on that page). They also have a wonderful sparkling cherry wine and cherry wine without bubbles that are delicious, and very specific to the area since it is the cherry capital. The best part about visiting Chateau Chantal is the wonderful location. It's on a hill on the Old Mission Peninsula which divides Grand Traverse Bay in half and you can see both the East and West Bay.

The East Bay

The West Bay

Our next stop was Brys, which was not as good as Chantal, but they had some nice wines. We also stopped at Left Foot Charley, which is a newer winery, and they specialize in white wines. They mostly weren't sweet enough for me, but they were good.

Our last stop was the Grand Traverse Distillery, which makes vodka and whiskey. We took a tour, which lasted a little bit too long for me, so I guess I must be a little ADD these days. They make an extremely pure product with very specific steps, like what type of barrel they use and how many times they drain the water. It was interesting to learn about how into the process they are. Their products have won a lot of awards too, and they haven't been around very long, so that's great for them. The tasting was kind of funny because you got these mini-shot glasses to try the drink with, and it was me, my parents, and my brother who just turned 21, having a shot party. The problem for me was that the vodka was just way too strongly alcoholic to have plain without a mixer, so I had a sip and gave the rest to my brother. It was very good though, and we bought one of each of their offerings.

Winery tours and tastings are really fun, and definitely an important part of your trip to Traverse City! Don't expect the best wines you've ever tasted, but you'll definitely find some good ones.

No internet!

2011-07-31T19:08:00.000-04:00

On Friday morning we left for Pennsylvania to visit my aunt, uncle, cousin and his fiancee. We were very surprised that the hotel we stayed at this weekend, despite advertising that it was wireless, only had wireless in the lobby and was wired in the room. Not a problem if you bring your laptop, but for my birthday my parents bought me an iPad, so I just took that with me, and it doesn't have an access for wired Internet! I know I could have gone to the lobby and used that wireless, or used my mom's laptop, but I was lazy and we weren't in the room that much because we were visiting, so I was WITHOUT INTERNET for the weekend! It was kind of a big deal, but luckily for a very short time. Now I'm home and can spend the entire rest of the day online. Ha. Although, to be perfectly honest, since I don't have anything pressing like classes to do online, it really wasn't that huge of a deal because I had other things and people to occupy my time. So tomorrow we'll be back to our regularly scheduled program of Traverse City vacation recounting. Hope you all had Internet-filled weekends!

Moomers!

2011-07-27T22:06:00.000-04:00

Moomers is an award winning ice creamery outside of Traverse City. Good Morning America awarded them the best ice cream in Americ award a few years ago for their signature flavor, Cherries Moobilee, which is cherry flavored ice cream with sweet and tart cherries, fudge swirl, and brownie pieces. YUM!

The problem with Moomers is that it is only available in a few stores up near Traverse City, in their adorable store that's abot 20 minutes outside of town, or you can order it online. This year a big change was that you can buy pints at Tom's, the local chain grocery store. So we bought some of them to start off out trip! We got grasshopper, mint oreo, something chocolate, and coconut almond delight, which isn't my favorite because I don't like nuts. But everything else was delicious! We also got cinnamon bun at some point, I think it must have been then. The next night we went out for ice ream and got lots different flavors! Black raspberry, mango, lemon custard, lemon sorbet with raspberry sauce, chocolate peanut butter chunk, and chocolate raspberry chunk. We all had fresh bowls, and some got multiple flavors, which is why we had so much ice cream! I didn't try the two lemon flavors because my brother and sister carry germs, but the black raspberry and mango were fantastic, the chocolate peanut butter chunk is a favorite from last year, and the chocolate raspberty was mine, and was fantastic! Chocolate ice cream with a raspberry swirl and raspberry filled chocolate cups. Amazing! My mom and I went back the days before we left and got some pints and quarts to indulge in that evening, and to take back with us. We got chocolate peanut better chuunk, cherries moobilee, coconut almost delight, toasted coconut (for those who don't like nuts), raspberry truffle (just like the chocolate raspberry but with vanilla ice cream), and ummmm..... somethng else. I think it was amaretto cherry.

Think we got enough ice cream??!!!!

The great part about Moomers is that their ice cream is the perfect amount of creamy and sweet, not too much of either, and the flavors are very authentic, not at all fake or artificially flavored. It's a real treat!

I was too busy eating the ice cream to take any pictures of it, but here are some pictures of Moomers!

Back from break!

2011-07-25T21:40:00.000-04:00

I've been back since Friday, just took a while to upload my pictures so I could make some posts. I really didn't take that many pictures this year because it was so ridiculously hot out, I just couldn't spend the extra time in the sun!

Our condo was fantastic again. Same model as last year, but on the second floor rather than the third floor.

Here are pictures of the view, but for some reason that I don't know and find frustrating, Blogger has rotated some of them. So you can either crane your neck to the side and peek at them that way, or just look at the ones that are right side up. Or if you know how to fix this problem, please let me know!

Looking out on the East Bay towards Old Mission Peninsula

Looking back towards mainland Michigan

There are lots of boats in the Grand Traverse Bay, but fewer on the East Bay than the West Bay

Some of condos are owned, and the dock is for boats that belong to owners. The seats on the beach are up for grabs.

Having fun in Lake Michigan! The lake is probably the best way to escape the heat and humidity.

Stay tuned for more sideways pictures of Traverse City!

Great birthday present!

2011-07-15T11:47:00.000-04:00

I'm getting discharged today! Unfortunately we won't be out on time for our Harry Potter tickets, but I have a feeling it will be in theaters for a while, and we still get to leave on Sunday for our trip to Traverse City!

On Wednesday and Thursday I had sedated procedures, so I wasn't up for much computer time. But I'm feeling better since starting the antibiotics and anti fungal. I can breathe more deeply, I don't feel as out of breath when I'm doing things, so that's all good news. I don't have to wear oxygen all the time anymore either. That was one of my guidelines for getting discharged, I had to be off oxygen, and so I am. I'll still be on some antibiotics and an anti fungal, but at least I'll be out and able to enjoy myself!

Today we'll probably be running around doing shopping for things we'll need to take up north with us. We'll be staying in a condo on the beach with a kitchen so we bring some snacks and things, but they have fantastic food up there too. Moomer's ice cream, the Pleasantown bakery, Black Star Farms raclette cheese and French pastries (the best croissants I've had outside of France!), and of course the wineries! So today won't be so birthday focused, but that's okay, I have a great dinner planned for tonight. Tuna steaks, smashed potatoes, roasted potatoes (my dad's favorite, if we don't have them it isn't Shabbat), pea pods, and for dessert, coconut cheesecake!

I wonder if they pushed to get me out of here because the hospital is full and they need my room, or because they really like me and wanted to get me out for my birthday and vacation. Probably both! I am pretty popular among the medical folks, if that doesn't sound too ridiculous to say out loud :)

Hope everyone has a wonderful day!

Crazy from relief!

2011-07-12T23:30:00.000-04:00

I'm taking a steroid every other day to help control my GVHD, and this past week I was having very strange, not comfortable symptoms the day after not taking the steroids. On Saturday evening it was really bad, so on Monday I had my photopheresis appointment and I asked them to let my doctor know. He called back, I explained my symptoms, and he thought it sounded like the problem was the every-other-day-steroid thing and changed my dose. One of my problems has been shortness of breath, and I noticed on Monday evening that walking around my house twice was getting me out of breath. This was no good. Of course this made me start freaking out about my lungs. It could be GVHD, could be another recurrence, could be lots of different bad things! And we're leaving for a week in northern Michigan on Sunday, what if things get worse while we're there with health care that's nowhere near as good as it is down here!!!!

So I called first thing this morning and left a message that I wanted to be seen before I left. Got a call back from a nurse in clinic who said the only appointment she could get me was Friday morning. One, I don't want to come in on my birthday, and two, that's not soon enough. So I emailed my doctor asking if he could see me earlier. He has clinic today, but called me back soon after I sent the email, we discussed things, and he said come in for a chest x-ray and then wait around until he's seen it and can tell us what the deal is.

We ran to the hospital as quickly as we could, got the x-ray, and then went upstairs to clinic and waited. I'm freaking out because I'm so worried about the results. My doctor came out looking for us pretty soon after we got there, missed us as first but eventually our waving and calling brought him over. He says "you have pneumonia." And then we got my pulse ox and blood pressure and made a plan for treatment.

PNEUMONIA! I'm so happy!!!! That's so much better than a recurrence or GHVD! I mean, it isn't good, but it's so much better than the other things I was worried about! I feel so much more calm and less anxious than I did before. What a relief! I've been telling everyone how happy I am to have pneumonia!

The next few days will be kind of annoying, but I have a sick liking of the hospital and nurses on the BMT ward. Yes, I was admitted as an inpatient. I already started a broad spectrum antibiotic and an antifungal, and got a chest CT. Tomorrow I'll be getting a bronchioscope (I think that's what it's called, can't remember) and a lumbar puncture with chemo that I was already scheduled for, which means I'll be pretty out of it all day because they are both sedated procedures.

So the hope is that I'll be out of here on Friday so I can celebrate my birthday! We have tickets to see the new Harry Potter movie at 1 PM (no, I do not want to see it at midnight, I like to sleep, thank you very much) and I have already spent my birthday in the hospital, and it wasn't that fun, so I'd rather be out. I'm sure you all understand where I'm coming from :) I at least hope I get out by Sunday so we can still go up north for next week. Fingers crossed! I'm not sure what the guidelines will be for letting me out but I'm guessing it will have to do with my pulse ox and what kind of pneumonia they decide I have and what my treatment should be. I'll keep you all updated. But not tomorrow, because I'll be sleeping most of the day :)

I'M SO HAPPY!!!!!!!!!! YAY PNEUMONIA!!!!

(No, I wasn't admitted to the psych ward, but yeah, I'm a little nuts today because I'm so relieved!)

Shoes

2011-07-09T18:15:00.000-04:00

I have huge feet. It's kind of embarrassing, actually. I wear a size 11, 42 in European sizes! I never found any shoes in France that fit, and even in the US it's a problem.

Because of my limited mobility, I'm supposed to be wearing shoes that have thick soles and are supportive, and if I wear sandals they have to have straps over my feet and around my ankle. Guys, those shoes are all UGLY! I keep looking and hoping to find something useful, and I found a pair that's... okay. Less bad than the others, and not too terrible. I want a pair of sandals for our trip to Traverse City, so I decided to buy them.

The sandals came yesterday. My other foot problem is that they are very skinny and sometimes I need to buy narrow width. These ones were only available in an 11 medium. So I tried them on, and they're too big! They're too wide, they don't fasten tightly enough, and I think they might actually be a little long. That isn't usually a problem I have with shoes!

I'm not sure if ordering a 10 narrow will help, but I'm thinking about it. I think it's funny that this is what led me to find shoes that are too big!

Pie Pictures

2011-07-06T18:01:00.000-04:00

First off, a big thank you for all the support on my last post. It really means a lot to me, and I can never express fully how much I appreciate it. Thank you.

In other news, today marks seven years since I was first diagnosed. I'm still here, so screw you cancer!

In food news, we had a great barbeque for the 4th of July, and a wonderful dessert! The cherries finally appeared last week so we had cherry pie with all the fixings. Michigan is the #1 producer of sour cherries in the US, and sour cherries are the ones you use in cherry pie. The Cherry Capital is Traverse City, located on the tip of the pinky finger on the back of your left hand. I hope everyone knows that the lower peninsula of Michigan is shaped like a mitten, which is great for pointing out locations and fun for jokes. We'll be up there for a week starting the Sunday after my birthday, the 17th, and I can't wait! We were there last summer around the same time and had a great vacation and I think this year will be just as nice.

Here are some pie pictures. My mom is a fantastic cook, and the pie was wonderful!

I kept a secret from you all

2011-06-30T22:02:00.000-04:00

Blogger friends, I have been keeping a secret from you for the past month-ish. I didn't say anything because I had a lot of people to tell, and was very busy going to appointments almost every day.

They found more leukemia, in my cervical spinal cord and in my spinal fluid.

The good news: that's the only place they found any leukemia. My bone marrow and gut were clear.

The bad news: I had to get 3 MRIs, one lumbar puncture (or spinal tap, which is when they go into your spinal fluid with a needle), a PET/CT, a regular CT, and an EMG, which is this weird neurological test where they use surface and intramuscular electrodes to measure muscle function. OMG, I am so sick of tests!

For treatment I had twelve days of radiation, which finished a couple of weeks ago, and it was highly successful. First of all it only took like five minutes, and I'm a fan of quick medical procedures, especially when they take place every weekday for twelve days. Secondly, it has made a huge difference in the way I feel and get around. I've mentioned that I've been having mobility problems, and getting the radiation has improved all of them. I'm not back to normal yet, but I've regained a lot of strength and function, which is so wonderful and encouraging. It's great to feel better every day instead of worse. The past six months have been the hardest I've passed in the seven years that I've been dealing with leukemia (July 6th will mark seven years snce I was first diagnosed). The physical limitations have been the worst thing I've had to deal with because they limit the things I can do, and I've never really had to deal with that before, certainly not for this amount of time and when I've felt well. It's just so amazing to be able to do things for myself again and be a little independent. I still have a ways to go, but at least I'm advancing.

For the rest of my treatment I'm getting intrathecal chemotherapy again. I got it last year too - it's chemo injected directly into the spinal fluid. This is basically a good thing for me. I don't get side effects (knock on wood!) and I know the group of people who give it pretty well since I've been there a lot before, so I'm pretty relaxed about getting what is a pretty freaky sounding procedure. I had my first session two weeks ago and my second on Wednesday. They draw some fluid and send it to the lab each time to be tested for leukemia, and the results from Wednesday showed no leukemia already from the treatment I got two weeks ago! I'll keep getting the chemo every two weeks for several more sessions, not sure how many exactly but I think my doctor will tell me on Tuesday when I see him next.

So despite the fact that there was some bad news, the most recent news is all good. I'm feeling better, the leukemia is out of my spinal fluid, and I'm down to doctor's appointments every two weeks instead of every week. I' really glad that I decided to defer the master's program I was accepted to until next year because it would have started last week and I would have had to drop it. I'm also taking more time to complete the last two prerequisite classes that I would have had to finish before the start of the master's program because I just need a break. Cancer gives you all kinds of good excuses to get out of doing things. Hahaha.

Thank you all for sticking by me through this crappy cancer crap. I feel very lucky to have so many wonderful people as part of my life, and it only says good things about you that you continue to support me. Thank you, thank you, thank you.

New Post

2011-06-25T12:43:00.000-04:00

I really don't like it when people stop updating their blogs very often, and I know that since November the most times I've posted in a given month is five. So, my summer resolution will be to improve that number!

Unfortunately, my life is pretty boring and I don't have that much to write about! Unless you enjoy hearing about my twice weekly physical therapy appointments. I'm doing these 80s style exercises with steps up and down, and they're quite challenging. Keep in mind, I can't get out of low chairs by myself right now and need a hand going upstairs too, so it's not like they're working me that hard, but I'm usually pretty tired afterwards. I've gotten so lazy that even though I know I need to do this stuff, I really don't want to! Can't I just magically be normally strong again?

On the plus side, no matter how much I eat I am not gaining any weight! I'm eating tons of sweets, my mom keeps baking for me, and it's summer so there's ice cream, which we all know is my favorite, and my weight is stable and the lowest I ever remember it being. I'm not underweight, although I could stand to gain a few pounds of muscle and strength, but hey, no complaints here at the ability to eat whatever I want and not gain any weight! I probably just jinxed myself and will gain 20 pounds in the next month, but for now everything is good.

Sorry, that was a super annoying paragraph. Will you forgive me for being annoying if I tell you that the steroids I have to take right now to keep the GVHD under control affect the way insulin processes sugars so I have to take my glucose and give myself insulin shots? Here's my secret though: I usually forget to take my glucose. But when I remember, the glucose level is okay and I don't have to take any insulin. Maybe my horrible specialist in France wasn't so wrong when he said I was a non-compliant patient. Ha! He wishes he were right about something!

Hope everyone is enjoying their weekend!

P.S. This was all meant to be somewhat amusing, so don't take it too seriously. But if I screwed up and it wasn't funny at all, do let me know, and I'll work on my style :)

Hair and Happy Father's Day

2011-06-19T14:47:00.000-04:00

Last weekend I had a revelation. The last time I had a full head of hair was in December of 2009, before my transplant. I've mentioned a few times here that about a third of my hair grew back, and we were a little unsure as to why it wasn't totally returning, if it was chemo or GVHD. It usually takes 2-3 months for hair to fully regrow after chemo, so as the months went by I was pretty disappointed to not have my own hair, and I was using Rogaine for Men to try to make it grow more. Baldness is the number one physical mark of being a cancer patient, and you just want it gone. I got a couple of wigs and wore them occasionally, but it's been a long time since I dressed up or put on a wig because I've been pretty busy with treatments and being weak and not doing a lot.

Last weekend it all of a sudden occurred to me that I don't really care if my natural hair ever grows back. It's probably been wiped out by graft versus host disease over the past 18 months. GVHD, which is the reaction of the donor cells against my cells, can cause joint, skin, liver, eye, and hair issues (among many, many others!). I realized on Saturday that my hair has been the victim of GVHD and is gone forever, and it really wasn't a big deal. I was surprised when I reread the entry I linked to above because I was so sad at that time at not having my own hair, and my attitude now is so different.

Hair is such a complicated issue when you're dealing with cancer. Losing it is a very clear symbol of your illness, and it takes a while to grow back to your original style after you've finished treatment; it can take a year or more depending on your hair. Cancer makes you feel pretty unattractive and being bald, especially for women, makes you feel even uglier because it's so abnormal. Everything else in your life changes so much, and you don't even look like yourself anymore. You have to come to the realization that if you need to lose your hair in order to live, that's okay. I am really lucky because my dad has been bald as long as I can remember and always been very cool about it, so the fact that I am bald has never been a problem for me, just the fact that cancer made me bald, if that makes sense.

So this week I wore the Aubrey wig almost every day, and it was great. I felt less sick, more normal, and even kind of pretty! I really like the Aubrey color and cut, and I got tons of compliments from everyone at the hospital. I had never worn a wig there before so it was a new thing for everyone. There's no point in wearing a wig to a cancer center, they're all bald anyway! You aren't fooling anyone!

Anyway, so there you have it. I'll be a red head until I decide to switch wigs. It's really liberating to have come to terms with this and be so comfortable with it. Look at how much easier my life is. I only have to wash the wig every 8-12 wears, it's easy to style, takes 30 seconds to put on in the morning... life is good!

A few words about my dad, since it's Father's Day and he's such an important part of my life. My dad and I are very similar, and we've always gotten along really well. He'll do things to help you without being asked, just by anticipating what you might need, and he's such a loving, caring guy, which you can tell by all of his actions. He's also really funny and has a list of reasons why being bald is great. Saving time and money are of course the most important reasons, but don't forget that if you're being chased by the police you can hide out in the melon section at the grocery store. Hahaha!

Thanks Dad, for being such a great guy, and Happy Father's Day to everyone else out there.

Dear Weather

2011-06-08T17:05:00.001-04:00

Dear Weather,

I don't know if the crazy weather we've had this year is due to global warming or weird weather patterns like El Nino or something, but I am not happy and I want a change! We went through a very cool, wet, cloudy few months and didn't have any leaves on the trees until the very end of April, when it snowed too just to make sure we didn't miss winter yet. In May we finally had a couple of days when nice temperatures and sunshine were mixed in with the rain and clouds and the cool temperatures and I really enjoyed the five days we had that were like that. Then all of a sudden you throw this 100 degree, high humidity junk at us and we just have to welcome a horribly hot and humid summer into our lives! Whatever happened to spring? And why is summer going to be so nasty? Because if this is a preview of what we're looking forward to for the next few months, it's no good at all! Please, take pity on your poor victims and let us pass a summer with much less humidity and heat than we've had the past week. I always recycle, I never litter, and I like nature and being outside, I'm an eco-friendly kind of girl! I'd even take clouds and rain rather than this! Well, not for the whole summer, but a few days a week I could put up with it. I did live in northern France for two years, so I know how to handle rain and clouds.

Love and best wishes for a healthier tomorrow without global warming making you nuts,
Soleil

2011-06-05T19:31:00.000-04:00

I had such a wonderful time with my visitor. We hadn't seen each other in about a year, so it was great to reconnect in person. I can't tell you guys enough how wonderful it is to have good friends, especially when you're going through the crap that I deal with all the time and you have people who tell you to complan to them about it, and who don't mind that you can't get out and do a lot because of mobility issues. It was a wonderful few days and I hope she had as good a time as I did!

I had a lot of margaritas this week! We tried a few different recipes at home while my friend was visiting, and yesterday my baby cousin had his first birthday party, at which margaritas were available (I assume for adults only, but in my family you never know! Haha). One was the full calorie mix, and one was the reduced calorie Bethenny Frankel kind. Reduced calorie basically meant no sugar, so it wasn't a big hit with me. I prefer the homemade kind with fresh ingredients. So next time you invite me over for a margarita party, have fresh limes around.

Visits!

2011-05-31T16:16:00.000-04:00

Having a great time with my visitor from California. Today it's hot and humid an the only day this week when it won't be raining, but it's also sunny and gorgeous out, which is quite the change for us! Yay sunshine!

Four Topics

2011-05-25T21:44:00.000-04:00

Number One
I don't want a boyfriend. Not that anyone has asked or that I'm going out and meeting people these days, but I was thinking about it the other day because of the book I'm reading and I realized that the idea of a boyfriend is very unexciting. There are several possible reasons for this. One, I'm a psychopathic loner. Two, I have too much else going on and no time to care about someone else that much. Three, I don't have any hormones and so no desire for any romance. Two and three are definitely true, and hopefully one isn't :)

Number Two
I'm having trouble typing and doing fine motor skills because of weakness and numbness in my right hand and arm. And I get these terrible hand and arm cramps.

Number Three
I decided to defer my entry into a masters in education with elementary teaching certification program until next year. I'm too weak to run around after kids, and since I'm having mobility problems it would be difficult to get around. The woman who is in charge of the program has been great and very helpful to me, and even said I could take a class in the fall if I'm up to it. I'm actually relieved that I won't have to start a full schedule of classes at the end of June. It also gives me more time to complete the two online prerequisite classes that I haven't finished yet. Normally I'd have six months to complete them, so in July I have to finish, but if I were doing the masters they'd have to be done before that started, so by June 20th I'd have to be finished. Whew! I need a break!

Number Four
It's still raining! The amount of rain we've had this spring is unbelievable. I thought that living in the north of France had made me used to the rain, but it never rained this heavily for this long. In Michigan we luckily haven't had all the problems with tornadoes and flooding that other parts of the country have had, but it's been a really crazy spring. The temperature was pretty cool until a couple of weeks ago, since then it's gone back and forth between the 60s and 80s every few days, and the rain has been almost constant. I wouldn't be surprised if it snowed again this month, to be honest! It's been nuts this year. I'm kind of enjoying it though, as strange as that is! I'm rarely outside and I'm not driving so I don't have to deal with the bad parts of the crazy weather and can look out the window and exclaim about how rainy it is or how cold it is. Life is luxurious when you have limited mobility :)

Movie Shooting!

2011-05-17T15:14:00.001-04:00

Our house wasn't chosen for the movie they're shooting in town right now, but another one in the neighborhood was, so my mom and I spent a few hours there last Tuesday watching the goings-on and chatting with neighbors. It sounds like these are not the scenes they wanted to shoot at our house, and this family was contacted a couple of months before we were about their home being used in the film, so no jealousy issues. And after watching what went on during the shoot, I'm glad they decided not to use our house. They drag stuff in and out, make holes in your yard, there are tons of people all over, and they kick you out of your house to change it and use your things. There weren't many people watching, just the people who own the house they were using and a few people from the neighborhood, and a couple of random people from around town, so maybe 15 total. That surprised me, I thought there would be a ton of people watching, but no, there weren't, and it was definitely better that way!

The "security" people, who I guess were there to keep us from running across the street or something. wouldn't let us take pictures of the outside of the house, which I didn't get at all. I snuck a couple of pictures on my cell phone, but they're sideways and I have a new laptop and can't figure out how to use the photo editing software, so you won't get to see them, unless I figure it out. Sorry guys. I did get a picture with one of the stars though! Which I also won't be posting, but it's a pretty good picture. You can email me if you want to see it.

It was a fun experience to watch, but nothing really happened. It was exciting when the stars arrived, in Cadillacs, and waved and came over to take pictures and sign autographs, but that was just for a few minutes. Most of the time they were in the house filming, and we were just standing around trying to make conversation. Michigan passed a tax credit bill a few years ago to entice movie studios to film here, so a few different movies have been in town, but they're reducing the tax cut because we're in so much debt, so the number of movies being filmed here is going to decrease. But a bunch of the people who were there had been to other tapings around town, and they were really into being there and talking to whoever they could talk to, and knowing when the stars would be coming and leaving. And it was my first celebrity siting, and I feel like everyone else in southeast Michigan has had a gazillion already! It was a fun experience. Then today when my mom and I were driving back from my appointment we saw the movie trucks again at a different house, so we'll have another opportunity to watch!

I successfully shamed the medical students into being good doctors!

2011-05-09T23:12:00.000-04:00

My session with the medical students went really well. I felt good about the way it went from the reactions of the students, and afterward the feedback from the professors was fantastic. I was also surprised by a $50 Visa gift card, which was totally unnecessary but very nice.

I spoke to first year medical students who are taking an infectious disease class right now, and my mom is one of the teachers, so the other professors have been hearing about my medical issues for the past almost seven years now. They asked me to come in for their unit on immune suppressed patients and the issues they deal with. My mom and I were on stage together to respond to their questions. I was expecting them to ask more medically based questions, but the students really seemed to respond to the fact that we're all around the same age and asked some really great questions about dealing with being sick. One asked what makes a good doctor, they wanted to know what I'll be pursuing a masters in, asked about my health insurance, the reaction of friends, how I entertain myself when I can't go out and do anything because of my immunosuppression, side effects of medications, etc. The two questions that stood out to me because they were so personal were one about how I maintain a good attitude through this, and one about dating with cancer. The attitude question, I tend to be a positive person and I also have a great support system. Dating with cancer, well, that one is a little more complicated. A lot of the time that I've been sick I was/am so concentrated on myself and what's happening in my life that it wouldn't be fair to a boyfriend, and I wouldn't be interested in having someone in my life anyway. It's also hard to find someone who would put up with all of the medical visits and crap like that.

I thought it was great that they were so interested in my life and how I deal with being sick rather than just asking about the medical stuff. People who are interested in patients are the best doctors. You want a doctor who cares about you as a person, not just someone who wants the paycheck a doctor gets. I tried to impress on them the dehumanizing aspects of being a patient and how important the comportment of the care team is and what sort of behavior patients appreciate. It seems like these students will make good doctors. Several of them came up to me after the class was over to thank me for coming and speaking to them too, which was nice.

Clearly I successfully brainwashed them into being good docs. You can all thank me in another three or four years when they're residents :)

Just wanted to post something new

2011-05-01T18:02:00.000-04:00

I think I'm going to leave the matzah background up for a little longer, even though Passover was finished on Monday night. I already wrote about how much I like Passover as a holiday. It';s a contest between Passover and Hanukkah for my favorite holiday. I like the candles and the lights of Hanukkah, and the different dishes we use for Passover. Clearly my priorities for picking favorite holidays are good and religious-based. Haha.

I felt like writing but I don't really have anything to write about that I haven't already put on here. The weather is a little warmer, but still totally cloudy and we're getting a lot of rain. The new thing this week is that we finally have some leaves and flowers on the trees, and it's basically still March, rather than May. I would like a little sun, please! I have to say though, the fact that my physical ability is pretty limited, I'm kind of hoping the weather stays bad because I can't do much outside right now. Sorry folks who live in Michigan, I'm being a little selfish.

I can't believe it's May already. This year is going by so fast! January seems like it was just a few days ago. I can't believe I've had these physical problems for five months now. I haven't walked up a staircase normally in five months. Hopefully this physical therapy will work.

Hmmmm.... can't think of anything else to bore you guys with. Oh, this week I'll be talking to first year medical students about being an immunosuppressed patient. I'm hoping to traumatize them into being good doctors :) Hahaha. I'll fill you in.

Classes, weather, and tattoos

2011-04-25T13:33:00.001-04:00

I finished one of my online classes this weekend, the educational psychology class that is a prerequisite for my masters program. I'm relieved that my course load is down to only three classes now. Another one, my statistics class, will be done in two weeks, so I'll be left with just two classes. My least favorite ones out of the bunch, naturally. They're both intro to literature classes. One is kiddie lit and the other is adult lit. I love to read and I always have, but something about analyzing literature just doesn't do it for me, or at least the way it's done in these classes doesn't do it for me. In any case, I have to take them and finish them before the masters starts at the end of June (provided I'm physically well enough to be in the program) so I have to finish them. If my grades aren't ass good as I would like them to be in either class, I have some excuses I can give about why I didn't do so well, right? I think falling and cracking my head counts as an excuse!

The weather here is still really strange. It's warmer and not snowing at least, but it's been raining almost constantly for the past week. We've had a little bit of sun but otherwise it's been rainy, cloudy, windy, and just not like spring at all! Some of the trees are budding, but we don't have any leaves out yet and the flowering trees haven't blossomed. It's been a really, really bizarre spring. I honestly can't remember it ever being like this before, and it's almost the end of April!

My brother was home this weekend because his university gave them a few days off for Easter. He had told us a month ago that he got a tattoo, and I honestly didn't believe him, but I saw it while he was here and yeah, it's real. The ironic part is that it's a Hebrew prayer called the Shema that declares "Hear O Israel, the Lord our God, the Lord is one," and Jews aren't supposed to get tattoos. It's banned according to the Torah - because you know, we Jews are really into allowing things, like eating ham. Ha ha. Yeah, Judaism is into not letting you do things. Anyway, my sister is also a fan of tattoos, and she loves getting them. She has at least six tattoos, and they're all pretty visible and colorful. My brother's tattoo is hidden. Personally, I am not a big fan of tattoos and I have never wanted one. It's fine if someone else wants one and decorates their own body, I don't judge anyone based on their love of tattoos, but it is not for me. I would probably choose something that I would hate a month later but be stuck with forever, and the idea of having a Tweety bird on my ankle at 80 years old is a little strange. I wonder what the difference is between my siblings and me, or the rest of the world and me? Tattoos are so popular now, and I just don't get why. My brother and sister and I share DNA and have very different views about tattoos, and I know that both of my parents are even more anti-tattoo than I am. Anyone else out there who doesn't like the idea of permanently inking something on their body, or with an explanation for why I feel like the only person in the world who doesn't want one of these?

P.S. Tomorrow is the last day of Passover, and I wanted to have a little bit ofa Passover theme on here before the holiday was finished. Enjoy the matzah background!

Snow day? Seriously? I think it's because of Passover.

2011-04-18T14:48:00.000-04:00

It snowed in Michigan last night! They predicted a total of 2-4 inches, and supposedly my town got close to 2 inches. It's April 18th and it snowed 2 or more inches in my state guys! They're predicting a high of 40 degrees Fahrenheit with some sun this afternoon so the snow should melt pretty quickly but then tomorrow a severe weather system is going to move in and we'll be getting lots of heavy rain and storms, but the snow will melt. I like snow and love looking at it out the window, but it's weird to be looking out at snow on my grass in the middle of April!

Tonight is the first night of Passover, the holiday when Jews eat matzah and no leavened bread products. I can't help thinking the weather is some kind of comment on the holiday, hahaha. Personally I love Passover (or Pesach, in Hebrew) and it's my favorite holiday. You're supposed to switch all of your dishes to dishes that have never touched leavened bread, and your diet changes quite a bit for the eight days of the holiday. I like having the different dishes and food. Sure, it's disappointing to not be able to eat pasta and bagels and things, but it only lasts a week and there are lots of other good things to eat instead.

I could have titled this post "Why I'm Weird." I like snow in April and I like not being able to eat leavened bread for a week. There you go Blogland, I'm beyond strange! Chag Pesach Sameach to those who are celebrating, and happy spring to those who don't have snow.

Tired of being sick

2011-04-11T21:52:00.000-04:00

I'm so mad at myself for being such an idiot and falling two weeks ago. I mean really, I should have just taken the curb cut/cross walk like a normal person instead of trying to push myself. I have all these appointments now for platelet transfusions and follow up appointments. I was starting to feel stronger and like things were going better since my brain relapse last December, and now I feel like I've taken several steps backwards. I'm weaker, I'm behind on my online class work, I have less free time, and I'm upset with myself. I do feel better than I did right after I fell, but being a neurologist's daughter I am of course worried about the skull fracture and the bleeding I had in my brain. I know I should focus on the positive, the fact that I'm feeling better, but I am so tired of having problems! I just want things to be "normal" - not having to worry excessively about my health, being able to do normal activities. I'm not driving right now, I'm not even going up and down stairs by myself. This is the least independent I've been the entire time I've had cancer and the most abnormal I've felt. I hate it. I just want to be able to go a week without seeing a doctor, being able to drive, being able to move normally and not having restricted mobility, problems getting upstairs, problems walking a lot.

Just complaining in this post. Emotionally I'm doing okay, really I am, but sometimes you just have to get it off your chest and complain. And there isn't much else going on in my life, so this is the topic I have to write about. Hahaha.

Seriously guys, I'm a wreck

2011-04-01T13:03:00.000-04:00

First update will be about the potential movie star status of my house. Looks like the movie decided to go with a non-Tudor style house, so they didn't pick ours. I think that probably makes sense for the character of the professor who owns the house, but of course it's too bad they didn't choose our house!

The funnier news is that I've fallen three times over the past week. The first time was just me being dumb and going backwards up stairs that I should have turned around to go back up. This is my weakness guys, I don't have enough strength in my legs to hold up my whole body on just one leg. So I fell backwards onto a landing and hit my head. I had to go in to the ER and get a CT scan of my brain to make sure there wasn't any bleeding because my platelets, which clot your blood, have been low. So that first trip was fine. The second time I fell I was rushing down the stairs, slipped and fell on my butt. I didn't go in for any special tests.

Then there was Tuesday afternoon. I've been feeling stronger, and I was downtown with my mom while she went to the post office to mail a package to my brother, and I returned some books to the library. Instead of going straight across the crosswalk with the curb cut, I cut diagonally across the road and tried to step up onto the curb. My leg couldn't support my entire body, and I kind of fell into a squat, and then fell backwards and hit my head. I cut it so I needed stitches too. All of these very nice people came to help me, one of them called an ambulance, another let me lean against him so that I could sit up, and I called my mom to come over. This was my first trip in an ambulance, which I guess is kind of amazing considering what I've been through over the past almost seven years since I was first diagnosed. The police and the ambulance guys were super nice, and everyone in the ER was great too. I really liked my nurse.

So as it turns out, I fractured one of the bones in my skull, and my brain bled a little. I needed stitches on the cuts on the back of my head too. I'm sore from the fall so I'm taking pain meds, and they put me on all of these other medications that make me sleepy and/or dizzy/lightheaded. So I'm having a little more trouble getting around these past few days! I was in the hospital Tuesday through yesterday evening but I'm discharged now and will hopefully stay discharged. I was supposed to be in a concert with my voice teacher's studio tomorrow evening, but I won't be able to because of the lightheaded/dizziness and difficulty getting around with these different medications I'm taking. It's also getting in the way of my classes. I was supposed to have all of this free time this week to get work done, but I was in the hospital and my brain definitely doesn't feel up to doing all of that work.

Anyway, that's what's happening here. I'm doing well considering how I could be doing, but could definitely be doing better. If this post sounds a little confused I'm sorry about that, I feel a little confused from all the medication side effects. Thanks for sticking around to read my posts guys.

Probably not a movie star

2011-03-20T11:26:00.000-04:00

So the guy from the movie company came to look at our house on Monday afternoon. It was really interesting to hear what he had to say and see what he was looking at in our house. First he sat down and talked with us for about a half hour, let us know what kinds of things we would have to put up with if they chose to use our house. Sounds like it would be a pain in the neck! He said that it would probably take about 15 days to do all the arranging and filming, and we would have to move out for that period of time. One week on each end for changing the furniture, painting, etc. They'd put us up in a hotel, but I don't know, living in a hotel for three weeks doesn't sound that great to me. The biggest problem for us and them would be the fact that one of the scenes is supposed to be a dinner party. Our house is strictly kosher, so anything they brought in would have to be marked on the package as kosher or from a kosher caterer. That means no pig, the meat has to have been killed a certain way, no shellfish, no mixing of meat and milk, and some other requirements. It would be a big pain for them to work around all of those requirements. They do offer payment, $1000 a day that they work in the house, $500 for days they have their stuff here but aren't working. When you think of how much they'd push up the electric bill, that probably isn't very much.

He also said that there is some possibility of having a background role - you know, the kind where you say "that's my right ear!" Which would be fun, but I don't know if it would be worth the annoyance of not being in my house for three weeks. Since I don't have many reasons to leave the house, being stuck in a hotel would be kind of annoying. And the date they are thinking about filming is right before Memorial Day weekend, so we wouldn't be able to BBQ for the holiday.

After he told us about the requirements, he went around the house and took pictures of every room. I was a little embarrassed when he took pictures of my room because it's such a mess! He liked our house though and said they'd get back to us within a few days if it seemed like it would work out for them. We haven't heard anything back yet, and my guess is that with our kosher restrictions it would be too much of a pain for them to use our house. But it's exciting that they thought about using it! I'll let you guys know what they tell us. It is kind of neat to think that our house could be in a movie! Even though I'm pretty sure we'll say no, it's a fun thought.

Exciting News!

2011-03-13T14:25:00.000-04:00

My house might be featured in a movie!

We found a note in our mailbox on Wednesday from a production company saying that they were looking at houses like ours to potentially use in two scenes in a film that they'll be shooting in this area. It would be a professor's house and used for two party scenes. They're coming out tomorrow afternoon to look at our house and see if it will work for what they need!

... which means we need to clean everything so that it looks halfway acceptable!

I'm not sure how I feel about our house being chosen for filming. It might be a huge pain in the butt. What if they make us move out for a week? Or if the filming takes a really long time? But it might be really fun too, and I might get to meet celebrities! I guess we'll see what they say tomorrow. I'll keep you posted!

Slipping away

2011-03-06T20:55:00.000-05:00

I'd been planning to make a trip to France this spring, and now I don't know if I'll be able to because of all the classwork I have and my limited mobility. I'm taking three, soon to be four, online classes before my masters starts at the end of June. Two of the classes have definite end dates, but the other two can be completed over the course of six months. Right now I'm not sure when I'll be done with them. There's so much work for these classes! They're only ten "units" but each unit is a lot of reading and answering of questions. And they have final exams! I should be buying tickets now so that I don't have to pay an arm and a leg, but I just don't know if I'll have time before the masters starts.

France is slowly slipping away from me. The problem with having time to visit isn't going to get any better when I enroll in the masters and hopefully, eventually, get a real job. It makes me sad. I loved my time in France, but I love my time at home too. I know if I visit for a couple of weeks it would be so hard to leave again, but if I were going back for an extended period of time, it would be hard to leave. Not to mention the fact that I did not like my transplant specialist in Paris. Going back for an extended period of time seems very unlikely. Nothing is set in stone yet about my travel availability, but it looks pretty unlikely for this spring, and the longer it gets between visits, the less likely they become.

Can I push pause on my classes for a couple of weeks and go to France? Please?

2011-02-27T18:30:00.000-05:00

First, the frustrating news. My gvhd is going beserk, so to try and calm things down I've switched the topical cream I use, started a new oral drug, and will be getting an IV drug once a week for the next four weeks. I'm still weak and am having trouble walking and getting up and down stairs, and I get pretty winded after minor excursions. This makes it difficult for me to go out and do things and see people. Blah blah blah, what else is new?

It's weird not having anything I really want to write about on my blog. I've had it for what, almost four years now (I can't believe it's been so long!) and most of that time I've had tons of stuff to write about. I guess online classes and trips to the hospital are not so interesting. I'm tired of my own problems. I need new ones. Anyone want to trade?

Online classes are about to get tougher to manage because my last class, a basic statistics class, will start in a couple of weeks. It's only an eight week class, thank goodness, but I'm having trouble getting all my work done with just three classes! I have assignments due every week and I know it's because the class is online and we aren't going in to see the professor in a classroom. I wonder if professors love giving online classes because they don't have to see students at all, just grade their papers? Who knows. I also have to register for my masters class that will start at the end of June, file my residency paperwork... In any case, good luck to me with all the work I have to do!

I think I'm the only person who isn't sick of the snow! We got another couple of inches this week and a powdering every day this weekend, but the temperature has been above freezing so it's all melting during the day. I guess that's good for commuters and such, but I think snow makes everything look so clean and pure and beautiful that I miss it when it melts. We still have what, three weeks of winter left? Hopefully we'll be able to fit in another snow storm!

Admitted!

2011-02-19T11:50:00.000-05:00

I found out this week that I got admitted to the masters in education program I applied for! I was really surprised to hear back so soon. I wasn't expecting to hear anything until March, especially since I only turned my application in about a month ago. I guess whatever I gave them was good enough! Now I just have to prove that I'm a Michigan resident and fill out FAFSA forms...

I have to say though, I'm not that excited about being back in school. All the work I have to do for my prereqs that I'm taking right now is really.... It's just a lot, a lot of work. I assume my work load will be different in the masters program because they won't be online and because the focus will be on learning how to teach, not learning a subject. If it isn't different though, it's going to be a really long year.

I'm still excited :)

Snow, GVHD, Classes

2011-02-11T10:40:00.000-05:00

There's still not a lot going on here. I have TONS of work to do for my online classes. I think they give you more work than a normal university-level class would because there's no other way to evaluate if you understand the class or not. I have something due every week! And not just a little something, like long essays and forum discussions. I haven't done the school thing in almost four years, so it's quite a shock!

Then there's all the health stuff. My GVHD is probably the worst it's ever been. I'm covered in weird skin spots, and I'm worried that I'm getting it in my lungs, which would restrict my breathing. I'm still not enough recovered from the weakness I developed when I was getting radiation and on very high dose steroids. The weakness is in my legs. Chairs have to be a certain height if I just stand up out of them, otherwise I have to use my arms to push myself out off the chair. Stairs are ridiculous. And there's the edema! GVHD can make you retain fluid and I am retaining a ton in my legs, which also limits my mobility, or at least makes it harder to get around. I'm so tired of being sick and having problems. I really thought I would be done with this by now. I'm 14 months out of my second transplant!

But I do love the snow! I don't drive in it, so I have no reason to not like it. I just look out the window and see how pretty it is in my subdivision. It's all going to melt away over the next few days though because it's going to be warm! You know, like 35 degrees instead of 2 like it's been the past couple of weeks. I guess we'll take what we can get during the winter!

So that's what's going on here these days. Classes, GVHD and doctor's appointments, and snow. Nothing exciting, but that's probably good :)

Odds 'n Ends

2011-01-30T21:15:00.000-05:00

My head hurts. I just took an exam for one of my classes that lasted three hours. Yikes! It's my own fault; I didn't study hard enough. I could have taken four hours if I had needed it!

Classes are...going? Good news is that I was able to drop two of them so now I am only taking four classes. Lucky me, right? Since I'm so late getting registered for everything, I've spent the last week just doing the assignments for this class that had the exam today (educational psychology) and am consequently behind in all my other classes. I'll catch up, I think? Luckily the other three classes are less date-oriented so I can do them at more of my own pace. As long as I finish them by the middle of June I think I'll be okay.

So who is still excited about all the snow we're getting?!?!?! I love snow. I wish I could go out and play in the snow like kids do but I don't have snow pants. Otherwise I would totally be there! It helps that I'm not driving and don't have to go anywhere, I'm sure! I can't believe how much snow we're getting this year. On Tuesday and Wednesday we're supposed to get 7 to 12 inches. Can't wait!

I haven't returned to any of my volunteer projects yet. I tried to meet up with my literacy learner but she's even more flaky than I am, so that hasn't happened yet. The classroom that I was volunteering in I think I'll return to a week from Monday. It will depend on how my weakness is. I'm still pretty weak, having trouble getting out of chairs and walking upstairs, and that isn't really conducive to working with kids. Hopefully I'll feel up to it, and hopefully my learner will be ready to start up again1 Although to tell you the truth, I don't know how I'm going to have time for these two things plus school work plus doctor's appointments. Fingers crossed that I can get time management under control!

Sorry for another boring post. I'm still getting back to normal from the brain thing and radiation.

2011-01-20T19:26:00.000-05:00

For the masters program I'm applying for I'm going to have to take some classes this semester. Everyone who applies for this program does because we didn't intend to be teachers when we were in college, so we have to fulfill some reuirements before enrolling. One of the classes that I have to take is a math class, so I picked a geometry class thinking it can't be that bad, and it's an online class so I can do it at my own convenience. I started the class today, and boy was this a bad idea! The textbook is terrible! It's hardly even a textbook, it's just these horribly dry, badly written pieces on geometry. Why anyone thought this would be a good book to use for a class is completely beyond me, Why anyone would write a book like this is beyond me too! I may have to find another math class, but I'm not sure I'll be able to. And you guys know how I feel about math anyway! Not my favorite subject. We'll see what I can do but I don't know, doesn't look so great right now.

I had something else I wanted to write about but I totally forgot what it was. Hmmmm. Guess I'll post again when I remember it!

Jury Duty? Not so much

2011-01-17T17:53:00.000-05:00

Unfortunately, jury duty did not go totally as planned. I got there, was shown to the jury room, chit-chatted with the other jurors.... kept chit-chatting.... kept chit-chatting..... We were waiting for like an hour past the time we were supposed to be in the courtroom. On Monday when they had selected us they kept talking about how it was important to be punctual because if the trial was longer than one day they would have trouble scheduling the second day! Anyway, the judge finally came in and told us the defendant had settled that morning and told us the story of why he was on trial. I guess he had been at a night club with his girlfriend, some other guy had asked her to dance, so he punched him. He ended up with 1 months of probation and an anger management class that he'll have to take.

I'm glad or the defendant because he won't have any jail time, but disappointed that I won't get to serve on a jury or at least another year. Like I said, I'm a total dork and think it would be really interesting! I mean, I would hate for someone to go to jail because of me, but I love the idea of hearing all the evidence (or the evidence they allow in the courtroom, in any case) and judging for mysel what I think the correct answer is. Oh well, hopeully there will be a next time!

Good news is that it gave me an extra day to work on my application for the masters program I'm applying for. Did I mention that I'm already late with the application because of the radiation I had to get? It was amazing to see what kind o shape my brain was in when I had a tumor in it. My essays just did not make sense. They were so bad that I was embarrassed! Good thing I didn't turn them in on time! The deadline was really just a recommendation, and I've been in touch with one of the women who is in charge of the program so she knows that I was sick (not that I relapsed, though she knows I had cancer) and she's been very understanding, so hopefully that won't hurt my chances. The application was turned in last Friday. Fingers crossed they let me in!

Someone's been bad about posting....

2011-01-12T13:10:00.000-05:00

Hello! Hope everyone is settling back into work and/or school now that they're back in session.

Things here have been fine. I'm still recovering from treatment, i.e. I'm still pretty weak (stupid steroids) and trying to rebuild my strength. I've been enrolling - errrr, trying to enroll is more like it - in the prereq classes I need for the masters in education that I'm hoping to be admitted to when I send in my application. Which I am also still working on. I told them I'd have it in by Friday, so I guess I'd better finish it by then!

I am LOVING the weather! I love snow, I think it's gorgeous, it's fun to play in, and it makes everything seem right when you look out the window, like there isn't anything wrong in he world. Sure, it's dangerous to drive in but you can usually avoid the idiots who don't slow down. Although my town doesn't seem to have plowed the streets of my subdivision after yesterday's snow yet. What's up wth that?

Aaaannnndddd, the most excitng news is I GOT SELECTED FOR JURY DUTY! Guys, I am such a dork. I have always wanted to serve on a jury. Laugh all you want, but I think it's cool. I got the letter calling me to a selection date when I was still not feeling so great so I had asked my doctor for a note to excuse me from jury duty, but then ether he forgot to write it or I forgot to pick it up, so I had no excuse for not being there. It's the third-ish time I've been called. The first time was after my first transplant so obviously I couldn't serve, the second time was in June on a date that I was out of town so I got a deferral, which was for Monday. No idea why the deferral took so long. I had forgotten all about my summons quite honestly and suddenly emembered over the weekend, luckily! I'm pretty excited, even if it is a not so interesting case. It's a misdemeanor asssault and battery charge. There are actually only 6 jurors and one alternate. I'm a little embarrassed to say that I didn' realize misdemeanor trials only have six jurors!

The trial is tomorrow and should only last the day. Wish me luck! I'll report all the details after the trial.

Happy New Year!

2010-12-31T18:10:00.000-05:00

Happy New Year to everyone!

May 2011 bring everything you want! Health, happiness, success, love.....

I haven't thought of any kind of resolution yet for the new year, but I hope it will be a good one for me! ONLY HEALTHY THINGS FOR ME PLEASE

That's mostly what I want. Health. And a little happiness if it can be managed :)

Happy New Year!

Merry Christmas!

2010-12-24T13:40:00.000-05:00

Despite being Jewish, I do love the Christmas holiday and spirit of the season!

And for those who won't be celebrating the Christmas holiday, some Chinese takeout to make it a special day!

Welcome back to the good and the bad

2010-12-19T12:58:00.000-05:00

Welcome back! I'm sorry for the break in posts. Things have been a little crazy around here.

Why? Because I relapsed. But it's kind of good news? This is pretty weird guys. I've been getting radiation to my brain for the past couple of weeks and apparently it isn't a big deal. What???? I was devastated at first, obviously, hence the not posting on the blog thing, but I guess it just isn't that bad of news. I saw my doctor yesterday and he seemed to think that the radiation I'm getting will kick my tumor to the ground and then he wants to take a break from chemo in general (which he had been talking about before I relapsed). I guess I'm just a little confused as to how this isn't really changing anything except adding radiation to my treatment plan. And a little confused because of the tumor in my brain. It's smaller now so I can process things better, but I had a rough few days at the beginning.

So the good news is that life continues probably as usual. Which is weird, because having a tumor in your brain is such a big deal, except that for me it isn't?

I guess otherwise I don't really know what to write except that I'm still trying to process all of this and process it in a good way that's positive and all. I mean, guys, look at my life - gut leukemia, brain leukemia, and it isn't a big deal? WTH???!!!!

On the other hand, the weather has been freezing but we did get snow. Yay! I love snow.

Hope you're all getting ready well for the holidays, and I'll see you all back here soon.

Site momentarily unavailable....

2010-12-07T14:43:00.002-05:00

... will be back in business soon. Sorry folks! Just a bunch of stuff going on.

2010-11-21T21:44:00.000-05:00

Well, I'm still having computer problems, so for the time being everything is status quo. BUT, I did pass my GREs! I got a 1200 composite, including a 550 on the math. Yay! Now I just have to write a couple of essays and get those turned in. That has to happen by December 1st, so I guess the fewer distractions I have the better, right?

And a happy belated birthday to my grandpa! He's 95!

Uh-oh!

2010-11-13T12:01:00.000-05:00

My laptop has some kind of problem. I start it up, it works fine for a few minutes, and then the screen goes black and I can't do anything! According to the error report I was able to get back once, it's something with the graphics reader. Unfortunately it won't stay on long enough for me to do anything about it! It's only been a couple of days and I'm going to keep working on the problem, but I'm starting to think I may have to say goodbye to my poor laptop! Luckily we have other computers in the house I can use, but until my laptop is fixed there may not be many updates on here.

GRE on Tuesday! Can't wait for it to be over!

GRE Update

2010-11-08T23:41:00.001-05:00

I took another practice test today. The verbal stayed at 710 and I got a 5 on each of my essays.

The good news from math? Up to a 540! YES! Amazing what a couple of weeks of studying can do for you!

Random question for the universe: why do I get junk mail from a group called "Americans for Limited Government" on the email account attached to this blog? Did I ever write anything that would make anyone think I'm in favor of limited government? If I did, I'm sorry. I don't feel that way. I don't think the new health care bill went far enough (meaning I'm all for a single payer system) and I think Wall Street needs more regulation. When I open up my spam folder and see a bunch of emails from Americans for Limited Government I want to call a bunch of takeout pizzas to their headquarters and make them pay for them. That, or put flaming dog poop on their doorstep. One or the other.

Pumpkin!

2010-11-04T23:26:00.000-04:00

Guys, I'm so busy these days I don't even know how I have five minutes to upload these pictures and write a simple blog post. Someday when I have time I'll write about everything I'm doing.

It was my job to carve the pumpkin this year, and my dad helped a little, like cutting off the top:

It had a really thick skin so we had a really hard time cutting it. I was exhausted afterward! Who knew that carving a pumpkin was so much work!

I found a really cute cyclops pumpkin template, and it didn't turn out too badly if I may say so myself:

Eventually we stuck it on our front porch and put a little votive candle inside to show the 15 kids in the neighborhood who trick or treat that we were open for business!

First tutoring session

2010-10-30T23:08:00.000-04:00

K, my literacy learner, and I met for the first time on Friday morning at a local library. I think we're going to get along really well. She's a little shy but seems very sweet. It sounds like her home life isn't the greatest. Her mom passed away when she was eleven and now she lives with her dad and at least two of her six (!!!) younger siblings. She doesn't see some of her younger siblings because she doesn't get along with their moms, so she stays away to not create any drama. Despite this, K is cheerful and very ambitious. She really wants to go to college and be either a nurse, a psychologist, or a judge.

I was curious to hear her read out loud, so I brought a few young adult books with me from our extensive collection, intending to have her read just for a couple minutes to get an idea of what she needs to work on. She picked a "you be the judge/you be the jury" version of the Lizzie Borden trial. It's a good book for an 18 year old with a low reading level because it goes over all of the facts of the trial in detail, but using simple language. K did a great job reading, better than I was anticipating based on her information sheet. She can read most short, common words easily but has trouble with longer words. She doesn't do much sounding out, sometimes switched nouns to verbs (murderer vs murdering), and sometimes doesn't understand what she's read. But like I said, she reads a lot better than I was anticipating based on the information I was given. She wants to improve her reading and spelling and work on her cursive.

K wants to continue reading the Lizzie Borden book, which is pretty cool, considering the fact that I just randomly picked it out for her to read a few paragraphs. We ended up reading a few pages and it looks like we'll be reading the whole book! I have a bunch of ideas for other things to work on in our next session. I'm very excited about working with her! She's really motivated and really wants to learn, so I think we'll be able to accomplish a lot.

New activities!

2010-10-27T11:33:00.000-04:00

Monday was very exciting. I had my first "in school residency." I'm volunteering with an organization that provides a lot of different tutoring services for kids, including sending you into the schools to work in classes on their writing. I'm working with three other people in a fifth grade class and, funny story, their teacher is married to a girl I went to elementary school with. We're doing writing conferences with the kids. They write something, we get them to tell us about it, read it to us, and then give them suggestions for making it better. We aren't correcting grammar or spelling, just getting them to do things like add more detail, be more creative, explain things more. It was a lot of fun! It seems like a great class of kids. They're creative, smart, well behaved, curious. I think this is going to be a really great opportunity to learn more about being in a classroom environment. The teacher, Mr H, even said that we're welcome to come up with our own lesson plans if we want. It wouldn't be a very involved lesson plan, I'd pretty much just give them a writing topic, but you know, it's still practice, and I'm still getting time in a classroom.

On Monday I also got assigned a learner from the literacy organization I'm working with! Since I'll be tutoring an adult we call the person we're working with a learner rather than a student, to keep the relationship on equal footing as a partnership rather than as a teacher-student thing. My learner, K, just graduated from high school but according to my information on her, she only has a beginner reading level. That means that she reads somewhere between a kindergarten and second grade level. She has trouble sounding out words, doesn't read much, and is scared of writing. How kids like this just get passed through the system without getting additional help is completely beyond me. A beginning level reader has trouble filling out basic forms! How can a teacher think that's okay? You have to give her credit, she must be very clever to have done well enough to be passed through her classes despite her low reading and writing levels. I haven't met her yet but we set up our first meeting, which will be on Friday morning. I guess I'll find out more then! At our first meeting we'll mostly be getting to know each other, going over her long term goals and what she wants to work for the next year. I'm a little concerned that her dad is going to try to be too involved. When I called to set up our meeting she wasn't there so he set up the meeting place and time with me. She is 18, still living at home, and she just finished high school, so it's normal that he thinks he should still be in charge of his little girl and her education. I'll just have to make it clear to her on Friday that I'm working with her, not her dad, and that she and I will decide things together. I guess we'll just see how it goes on Friday!

I'm really excited to be doing things that matter, and not just filling my day with "stuff" like going to the pharmacy, going grocery shopping, whatever. I'm actually doing things that make a difference, doing things that I like, that are connected to my future education and career plans. It makes me feel like my life is on play again instead of being stuck indefinitely on pause.

2010-10-24T00:29:00.026-04:00

I used to be friends with someone. In fact, she was one of my best friends. Eventually I decided that she was not worth the effort it took to continue being her friend and I let the friendship lapse while I was in France. I was tired of listening to her complain about everything - how hard her life was, how she didn't have time for anything besides medical school, the fact that she never called. Basically, after several years of self punishment trying to be friends with someone who will always put herself first to the point of not caring about the problems of others, I realized that no friendship is worth that kind of treatment. This is someone who, while I was in the hospital getting chemotherapy when I was first diagnosed six years ago, complained to me about how hard it was for her to study for the MCATs and told me that I "had no idea what she was going through." She was right, I didn't I was far too busy fighting for my life to have time for anything as serious as the MCATs. This is someone who couldn't be bothered to call me during the next several months while I was getting treatment because she was too busy with school work. And even before I got sick, this is someone who made a big stink when I asked her to drive me to the pharmacy to pick up medication when I was so sick I could barely speak.

I don't know how I put up with her for so long. When I look back on our friendship it's a series of hurtful events that made me feel bad about myself. I guess I'm just a glutton for punishment. That and the fact that cutting her out of my friend group at that point would have created serious drama. Or maybe I was constantly searching for her approval, for her to break down and do something that proved she was a good friend. I honestly don't know.

Fast forward to this past spring, when a couple of friends came to visit me. They had just seen this other girl and told her that I was sick again. Her response? She already knew. She already knew, yet she had said nothing to me. No phone call, no note, no message passed through these other friends. Nothing. No acknowledgment that we had ever been friends or that she had any kind of emotion regarding my situation. Remember, this is someone who wants to be a doctor. Can you imagine having a doctor who is either so emotionally constipated or so socially awkward that they can't pass along a message of "hope you get well soon?" !?!?!?!

I really wish this didn't bother me, and that I wasn't still thinking about it and nursing these angry feelings. It makes me angry, and it also really hurts. Even though I don't want to be her friend anymore and haven't for years, it still hurts that she couldn't bring herself to say something to me. Her inability to say anything makes me wonder if she ever cared about me at all. She certainly didn't show it when we actually were friends, I wish I weren't hanging onto these feelings. It's bad for the spirit. I can't help the way I feel, but I really wish I were over it already.

The more I think about it, the more I think back on her behavior over the years, I think she's one of those people who just can't deal with cancer. She probably can't deal with mortality and illness. That, and she's completely self involved. And yet she's a doctor.

A lot of cancer patients lose friends when they get sick because they just can't handle it. The cancer makes them uncomfortable and scared because they have to confront their own mortality. I am very lucky to have wonderful friends who have stuck by me through the ins and outs of this disease over the years. I should try to concentrate on them, rather than on people I didn't even want to be friends with who ignored me when I got sick again.

Practice makes perfect

2010-10-19T21:57:00.000-04:00

This GRE thing is turning out to be more of a pain in the butt than it should be. I signed up for a class that was supposed to start run Sundays 12-3 and Wednesdays 6:30-9:30, but then I got a call from the Princeton Review says in the class had been canceled because I was the only one enrolled. I was welcome to enroll in another class starting tonight. The hours of the class? Tuesdays and FRIDAYS from 6:30 to 9:30! Who in their right mind would sign up for a class on Friday night rather than a class on Sunday afternoon?!? Anyway, I decided not to enroll in that class and to just do an online review instead.

I also took my first practice test! I was pretty happy with my verbal, I got a 710 (out of 800), but the math didn't go quite as well. I got a 450! That is very typically me. I'm terrible at math, like really, really bad. And at this point I've forgotten everything I once knew...errr... sort of kind of knew. Well, the average composite for my program is only 1000, so I'm not freaking out. Yet. Although I did freak out a little when I was taking the math test and realized I had no idea how to answer half of the questions. Really, only a little.

At least now I know what I have to work on! Read: all math skills I should have learned (and remembered!) since I entered kindergarten.

Straight Lines

2010-10-14T22:49:00.000-04:00

I went to another training session on Tuesday, but this one is to work in the public elementary schools helping the little kiddies with their writing. As part of the training they showed us a video of a third grade teacher working with a few different students on the writing and revising process.

The teacher is working with this kid and asking him to underline or circle parts of his personal narrative that illustrate important ideas. So the kid takes his ratty old Number 2 pencil and starts drawing these haphazard, very crooked, going all over the place lines, and then decides to add on a "roof" and turn them into circles, which are also haphazard and all over the place. Not to mention the fact that his handwriting was barely legible. His narrative was absolutely wonderful - lots of description, an excellent effort for an eight year old.

I had to stop myself from laughing! In France this kid would have earned himself a punition. In France all the kids have pencil cases fully stocked with pens in all different colors, erasable pens, white-out, highlighters, scissors, rulers, calligraphy pens, erasers - you get the picture. Writing in pencil is generally frowned upon, pen is standard. One time I told the kids to write in pencil because it's easier to erase if you make a mistake, and the teacher came back in the room and yelled at them for not using pens! If kids have to underline anything it takes 5 minutes because they have to pull out their ruler, line it up exactly, and then draw a perfectly straight line. And of course by third grade (CE2 in France), the majority of kids have beautifully formed, impeccably neat and always legible cursive handwriting.

I love America. Way to value creativity over conformist handwriting and straight lines!

Overextended?

2010-10-11T22:52:00.000-04:00

I am so busy lately! Between literacy training for a couple hours twice a week, either Gilda's Club or bollywood dancing on Tuesdays, and French group on Wednesday, my evenings are booked solid. Add to that my usual routine of appointments (two last week, two this week). Then we went to see my brother play this weekend (they won again! Up to 5-1 on the season and my brother continues to play well), and I just signed up to start volunteering for an hour once a week in one of the local elementary schools. Plus starting my GRE class in a couple of weeks. Plus my application for grad school. Plus..... I can't even remember anymore. Do I have other things to do?

Unfortunately my GVHD is acting up, which is stressing me out a little bit. I'm getting more dry, thickened, discolored patches of skin. Mostly they're just little dots, but it's happening despite applying steroid cream every day. I'm going to go up to twice a day. I'm also having some gut discomfort when I eat and a little nausea. I'm hoping the solution is to eat smaller amounts more frequently. Today is Day One of the smaller amounts more frequently experiment and so far it's going well. I'm just hoping I can get the symptoms under control before I go see my doctor on Friday so that he won't put me on steroids. Steroids are my enemy.

AND I've been super tired recently. No need to look too far on that one, but of course I always say "why am I so tired?" Guess I'm not as totally ready for a full load of activities as I thought. Fatigue is the most common complaint post-transplant, and I've had two, so I guess that means I get to complain about being tired twice as much? Hahaha. I know this is a problem, I should have anticipated it, but it still bothers me that I'm not fully recovered from transplant yet. Or even worse, that this level of fatigue might be my new normal.

But it's really great that I'm getting out there and doing more things. I'm very excited about starting my new volunteering programs! I just have to make sure that I don't take on too many things, that I keep my activity load manageable so that I can fulfill all my commitments and not make myself sick.

Shame on you, NFL

2010-10-06T23:45:00.001-04:00

Those of you watching the NFL may have noticed the influx of pink everything this weekend as part of the NFL's annual campaign to "raise awareness" about breast cancer. To quote from their press release, during the month of October every NFL game will feature:

» Game balls with pink ribbon decals used for every down
» Players wearing pink cleats, wristbands, gloves, chin straps, sideline caps, helmet decals, eye shield decals, captains' patches, sideline towels and quarterback towels
» Pink coins used for the coin toss
» Pink sideline caps for coaches and sideline personnel and pink ribbon pins for coaches and team executives
» Officials wearing caps with pink ribbons, pink wristbands and pins and using pink whistles
» On-field pink ribbon stencils and A Crucial Catch wall banners
» Pink goal-post padding in end zones
» A Crucial Catch pink glow necklaces for all fans attending the Bears-Giants game on Oct. 3

After the game these items will be autographed and auctioned off, with all proceeds benefiting the American Cancer Society. You can also buy special pink team shirts and other merchandise, and an unspecified portion of the proceeds go to breast cancer charities. Special pink trading cards with facts about breast cancer will be included for free when you purchase a pack of trading cards. Gatorade carts will feature pink ribbon stickers. Players and teams will supposedly be involved with different special events and fundraising things. At one of the games this past weekend 125 breast cancer survivors were on field during the singing of the national anthem. One player, whose mother died of breast cancer, will be donating $1000 for every reception and $5000 for every touchdown he scores during the month of October. Oh, and there's this website that mostly encourages you to buy or bid on things but also includes a helpful reminder to schedule a mammogram and the opportunity to sign up for ACS fundraising walks.

Notice anything missing?

The NFL itself isn't donating a single cent to anything breast cancer. All of the money raised by their campaign comes from the fans. Only a percentage of the profits from the pink team merchandise goes to breast cancer, and I would be absolutely shocked if that percentage is higher than 20%. My guess is that it's closer to 10%. I'm not sure where the rest of the money goes, but someone is going to be profiting off of the general public wanting to help breast cancer, whether it's the NFL or the teams or the manufacturer I don't know. Not to mention all of the good publicity the NFL gets from "raising awareness" about breast cancer.

But what are they doing, really? A stupid pink whistle doesn't do a damn thing for breast cancer. Pink goal padding in the end zones? Pink glow necklaces? Seriously??!?!?!! How on earth does that help? I just find it irritating, A woman in my young adult support group, who is a sports writer and breast cancer survivor, says she watches football to forget about breast cancer and hates being bombarded by it all month long. I highly doubt that this will convince more than a handful of women to go get a mammogram. I wonder how much money this will actually raise. Who is going to bid on a pink game ball, even if it is autographed by Tom Brady? Let's be real here! Are that many people going to buy pink t-shirts? I really don't think we're talking about large sums of money here. This is a completely self serving, nearly meaningless campaign, an opportunity for a bunch of meathead football players to prance around the field in pink cleats and think they're doing something meaningful while the big wigs in the NFL corporate offices pat themselves on the back for turning this into a profit.

Meaningful would be distributing cards about self breast exams. Meaningful would be donating proceeds from ticket sales to organizations that sponsor mammograms for uninsured women. Meaningful would be donating money out of the NFL's well-padded pocketbook to research. Meaningful would be raising awareness about breast cancer in men, because hardly anyone ever talks about that. That's an issue that actually needs some awareness raised. Meaningful would be taking the money used to manufacture all of this pink crap and donating it to a breast cancer organization instead.

Not to mention that breast cancer, and cancer in general, isn't just happy pink chin straps and wrist bands and ribbons on football fields. It's people getting sick, going through painful mastectomies and reconstruction, going through the hell of chemotherapy, and dying. Yes, we've made a ton of progress and more and more women (and men) are thriving after cancer, but the bottom line is that people are still dying. No amount of pink merchandise can take away the pain of diagnosis or the loss of a breast or the loss of a loved one.

So shame on you, NFL, for trying to profit off of cancer patients and staging a publicity stunt in the name of breast cancer awareness. Shame on you for getting everyone else to spend money and not giving a dime for a good cause. Shame on you for being a bunch of selfish, greedy profiteers.

P.S. Don't get me started on that idiotic facebook thing about where you put your purse. I've been ranting about it all day.

Back to school?

2010-10-02T11:40:00.001-04:00

A couple days ago I was bumming around online, looking at degree programs I might be interested in, when I saw a date that shocked me.

December 1st. As in the application deadline. As in two months from now.

It hadn't occurred to me that I would have to apply for next year's graduate programs right now!

My brain went into overdrive immediately and I hurriedly searched the application requirements. The normal things were listed: application form, personal statement, letters of recommendation....

GRE scores.

It DEFINITELY never occurred to me that I would have to take the GRE in the next couple of months! I would definitely want to take a prep class (I am not motivated enough to study on my own and need to have someone make me do it), so I looked into class dates and test dates and how long it takes to get your scores. It's doable in two months, but barely. My test scores might arrive a few days after the December 1 deadline, but I'm assuming that wouldn't be a huge problem.

So I can get the application in on time, my doctor wants me to enroll in school and live a normal life, but I hadn't totally committed to this program yet. It's a one year masters in education with certification to teach, but I was also thinking about getting a masters in public health, a masters in social work, and every now and then I still toy with the idea of being a doctor before the idea of spending the rest of my life in a hospital makes me convulse in horror. Sorry Dad, the most recent relapse has firmly nailed the lid on the coffin of your dream that I would be a doctor.

I decided to commit to the idea of going back to school to be a teacher. I'm passionate about the idea of educating and preparing youth for their futures. It's something that really speaks to me. If I change my mind after a few years, I can always go back to school. Very few things in this life are permanent, you can almost always change your mind.

Now I have to decide what level to teach, elementary or secondary? I loved teaching elementary students in France. I love working with kids, I find it pretty easy to come up with teaching methods that work well for them, and it's a good fit for my personality. I've never worked with older kids, but I like the idea of working with high school students, especially teaching high school science. I do worry that after ten years of thinking like a young child I might be starved for adult conversation and company, but again, I can always go back to school.

I also have to decide on a program. There are two universities close to my house. Let's call them School A and School B. Both have post-baccalaureate routes to teaching certification. School A has the masters with certification that I wrote about above. School A is also a much more prestigious school in general and therefore has a smarter student population. School B is considered to have a better school of education. School B, however, only has a post-baccalaureate certification in teaching, not a a masters with certification. At School B I would essentially be taking the undergraduate teaching major curriculum but not getting a degree after doing all that work. I don't like the idea of going back to school and not getting an actual degree at the end of it. I know someone who is doing this program at School B and she says she loves her professors, but her fellow students are kind of dumb undergrads. Call me a brat, but I don't like taking classes with people who aren't as smart as I am. That's what I did last fall when I was taking classes (at School B, actually) and it was frustrating for me. School B does have the advantage of being a much more complete preparation because you're taking the full undergraduate teaching curriculum, and at School A it's a condensed one-year curriculum, but I can always take more classes as a continuing education kind of thing if I feel I need them. Also, I already have two years of experience in a classroom, so that has to count for something.

So I decided to apply to School A's masters program, and that basically made my decision of teaching at the elementary or secondary level for me. Because it's only a one year program, you have to have completed subject-specific course work (math, science, history, etc) in previous degree programs. I don't have enough credits in anything to be certified as a subject teacher in high school, definitely not as a science teacher! So elementary school it is, and I'm actually not even sure I have enough subject course work for that either. I have to submit my undergrad transcript for evaluation by the program.

I'm really happy with all of these decisions. The more I think about it the more excited I get, so I know I made the right decisions. I'm also glad that everything has to happen so quickly, especially the GRE stuff, because it means I just have to do it and I don't have time to think about it. Now I just have to figure out what to do about recommendation letters written in French!

2010-09-29T21:19:00.003-04:00

I like this picture, but I'm not sure about all the brown I'm using for the colors in the blog itself. I'm not a big fan of the color brown, it's so drab. Unfortunately, it seems to match best with the picture.

New look!

2010-09-28T12:19:00.003-04:00

Blogger Template Designer = Best Toy EVER!!! I literally just spent a couple of hours playing with it. There are infinite design possibilities! It's amazing! Next time I have ADHD chemo brain I am totally playing with this thing. Who am I kidding, I'll probably keep playing around with it all day today, and tomorrow, and maybe the next day... basically, don't be surprised if the look of my blog changes frequently over the next few days. I'm not sure if the colors are a little garish right now, but I'm craving bright colors these days because fall has finally come, and with it the grey, rainy weather! I need brightness!

2010-09-26T19:32:00.002-04:00

My brother didn't have as exciting of a game this week as he did last week, but his team did win, so they are 3-1 for the season!

I'm feeling better today. I had a bit of a chance to rest, and my crazy chemo brain has finally finished. Chemo brain is an unfortunate side effect for many patients that makes it difficult to concentrate, analyze, remember things... I've had some not-so-major memory problems from chemo before but the crazy chemo brain I get when I have IT chemo and Vidaza in the same week is insane. I feel like I am completely ADHD, unable to concentrate on anything, unfit for anything besides curling up in a ball on the couch to watch TV. Glad that's over!! Hopefully I won't have those scheduled on the same week again. The results of my lumbar puncture on Monday came back leukemia-free so I'll be able to taper off the IT chemo.

Another busy week ahead! I'll be starting training to be a one on one literacy or ESL tutor with a local nonprofit. I haven't decided yet if I want to tutor for literacy or ESL. I have a lot of experience with ESL from when I was in France, and I enjoyed it, but I'm not sure if changing to literacy might be a nice change of pace and also more useful in the future.

Sorry for the boring, business-y update. I'll try to be more interesting later this week!

Wanted: A day when I can actually sleep in!!!

2010-09-21T23:21:00.004-04:00

I'm tired. I've had to get up between 7 and 7:30 every morning for the past week (it seems... might only be five days). I'm sure to many of you working folks that sounds like a luxury, but I'm used to getting to sleep until at least 9 AM. I have cancer, give me a break!

The weekend would normally be a good time to sleep in, but I spent an epically long day in synagogue on Saturday because it was Yom Kippur, the Day of Atonement, when Jews atone for our sins. This is perhaps worthy of it's own post, because although I sat in services for hours on end, it didn't do a lot for me. Honestly, how much can I possibly have to atone for? I spent most of the past year in a hospital!

Not only do I have to wake up freaking early for the rest of this week too, including Saturday, but it's a mega-treatment week. I had a lumbar puncture with chemo yesterday (no leukemia found in the spinal fluid, yay!), chemo from now through Saturday morning (at 8 AM so that we can hit the road for my brother's football game), and ECP tomorrow and Thursday. At least these all involve sitting in chairs, which is hopefully conducive for napping.

Good news from the weekend: my brother had a great game! Yes, he rejected the cultural heritage left to him by Sandy Koufax and played on Yom Kippur, but apparently G-d smiled on him and he ran back a blocked field goal attempt 75 yards for a touchdown, had an interception, a blocked pass, and several tackles. That G-d, such a jokester. My brother skips services and has a great game, I sit through them and get nothing spiritual out of it at all and a couple of completely ridiculous sermons to boot. That'll teach me to try to be a good Jew!

This is amazing

2010-09-15T13:31:00.001-04:00

I literally cannot stop laughing!

2010-09-12T22:50:00.002-04:00

I've had an interesting few days. I got an email from the Directrice of V School with some news. One was that they apparently sent me a package of drawings the kids made for me that I never received, which was really disappointing. I have received similar packages from my other schools, in addition to all the drawings the kids made for me while I was there, and I treasure all of them. I hate La Poste!

She also said that they are going to have an American assistant this year. Last year they had a local person teaching English, not an assistant, so the position still belonged to me, in a way. I was devastated when I read it. I wanted to curl up on my bed in a ball and cry. It's the final nail in the coffin of the experience I had in France for two years - it's really over. Someone else has my position now and she'll be the American assistant. All the kids will run to give her bisous when she walks into the school yard, she'll get to chitchat with the other teachers at recess, she'll shop at Monoprix and my bakery. Someone else really will be living my French life. MY French life. They are MY schools, MY students, MY coworkers, MY friends!

I was really feeling lousy, so I had a little discussion with myself (we're pretty good friends, me myself and I). I had a good time in France, but that isn't my life right now, and I'll never be able to have that exact same life again. Even if I get back to France someday it's extremely unlikely that I'll be an assistant in that same town and working in the same schools. It was great while I was doing it, but it's over now. Not on pause, over. On the positive side, I'm still in contact with a lot of my coworkers and those are friendships that will last a long time. They won't like me any less just because there's a new American in town. The kids obviously still remember me, and I can keep buying their love by sending them more packages of candy. I'll always have the memories of my time there, but I have to redefine my relationship to this place that means so much to me.

It's been very hard for me to let go of my time in France, harder than for most people because my situation changed so drastically once I got back to the US. I was yearning for a time when my life wasn't dictated by treatments and doctor's visits, I was independent, blah blah blah, I've written about this before. I think I'm okay now with another American taking my spot. I've come to terms with the fact that I won't be able to get back a life that was over a year ago. I can't get back the past. All I can do is work on the future.

And in my future I foresee a trip to France! Like I've said before, probably after the New Year, maybe April-ish? I should start planning now if I'm serious about going!

Shanah Tovah!

2010-09-07T21:51:00.002-04:00

Shanah tovah means "good year" in Hebrew. Rosh HaShanah, the Jewish New Year, starts tomorrow at sundown. Rosh HaShanah, along with Yom Kippur, is one of the high holidays - the two major Jewish holidays. It's a time for reflection and introspection, where we think about the year that has passed and resolve to make changes for the coming year. It's also a time of joyfulness and hope; we made it through one year and hope for all kinds of good things in the year to come. It's traditional to eat apples dipped in honey to symbolize a sweet new year. Honey cake is another sweet treat that many people enjoy at this time. Sadly, I'll be skipping the honey this year because of the risk of botulism.

And like all Jewish holidays, you're supposed to spend a considerable amount of time at the synagogue for religious services. Services are punctuated by the blowing of the shofar, a ram's horn, which can be seen and heard here. Yes, the shofar has broken through on youtube!

The sound of the shofar is supposed to call us to repentance and reflection. Isn't it a haunting sound? The shofar is my favorite part of the service.

Also an Eid Mubarak to all! I love it when everyone's holidays coincide. It reminds us that we're all more the same than we are different.

L'shanah tovah, and may we all be inscribed and sealed in the Book of Life for a good year!

Saturdays at the Big House

2010-09-05T00:01:00.007-04:00

Guess where I was today?!?!

If you guessed the largest stadium in the US, you would be correct! Michigan Stadium, home to the University of Michigan football team and affectionately known as The Big House because it is BIG, was recently renovated and rededicated this afternoon for the opening game of the season. Official capacity is 109,901 and today we set an all-time attendance record of 113,090! That's a lot of people! (and a lot of germs!)

We've had season tickets to Michigan games for several years now. Unfortunately now that my brother plays college ball on Saturdays this is the only game we could go to, but it was worth it to come for this game! Michigan won 30-10 over Connecticut and looked pretty solid overall. The quarterback is amazing - he runs, he throws, he IS the offense. You can see the renovated press box and new luxury boxes above the traditional bowl shape.

There's nothing like sitting with almost 115,000 screaming fans in the wind, rain, sun, snow.... you name the weather, I've watched a football game in it. It's such a vital, life-affirming experience. You KNOW you're alive when the kid behind you is jabbing his knee into your back and you can smell the Jack Daniels the guy next to you smuggled in while the band is blaring "Hail to the Victors" and the student section is screaming like banshees!

These are all pictures of the marching band from the pregame show, and taken on my crappy cell phone camera. I was too busy during the game to take pictures of the guys playing! The band marches down the field in a big block M, then they separate and the team runs out between them under a banner that says "Go Blue! M Club Supports You!" Check out our seats! We're on the 30 yard line now!

I also got to meet Rick Snyder, the Republican candidate for governor of Michigan. I bent his hear a little about health care. He had some good things to say, and I was excited to meet The Nerd!

For the rest of the fall I'll probably be going to some of my brother's games, which are significantly less exciting, but we're hoping that he'll have a good season for himself. At least at those games when the weather gets bad we can go sit in the President's Box where they have free food and drinks. Small time football programs definitely give you a few more perks!

Paranoid!!!

2010-09-02T21:29:00.004-04:00

Instead of worrying about my real health problems, I usually get derailed worrying about weird, fake, paranoid health problems that have absolutely no bearing on anything important. It's a delightful vacation.

My teeth, for example. I worry a lot about my teeth. I'm sort of obsessive about flossing and brushing and using mouthwash. I worry that they'll just start falling out! I mean, it could happen, right? I bite into a nice, crunchy Greek salad one day and find out that the olives weren't properly pitted and crack! Out falls part of my tooth! I also worry about them being too sensitive, about gum recession, how white they are, how despite three years of braces and wearing a retainer at night for years they still aren't as straight as they should be ... but mostly that they'll just start falling out. Totally normal thing for a 26 year old to worry about, right? Needing dentures and fake teeth?

My other paranoid fear is my skin aging. I remember the days when I had a smooth, unlined forehead. Now my forehead is full of fine lines! I should have started using anti-aging products ten years ago! Why didn't I stock up while I was in France? Half of the space in every pharmacy there is devoted to anti-aging products! Now it's probably too late to reverse the damage and I'm going to end up with the skin of a 60 year old while I'm still in my 20s! I'm really good about my skin care - I wash my face every day no matter how late I get back from wherever, and I always wear at least SPF 30 sunscreen that protects against both UVA and UVB rays, every day, no matter what the weather.

So, I decided that there's no time like the present to try to prevent new lines from forming and try to minimize the appearance of the fine lines I already have. When I was at Target a couple days ago I bought Olay Total Effects Revitalizing Foaming Cleanser. It's too early to know if it's making a difference, obviously. But then, I did a personalized skin care quiz thing on the Olay website just now, and according to them I treat my skin like garbage! They said that in addition to everything I already do I should be using toner, two different face washes, moisturizing twice a day and using some special anti-aging eye cream to reduce puffiness and dark circles! I have to go back and buy more products! Obviously that's exactly what they want, for me to spend more money, and of course the products they recommend are a little more money than I feel like spending on skin care. Or is it? I mean, can you really put a price on clear, youthful looking skin?

In any case, I like trying out different face washes and moisturizers, so I can at least have a little fun with my bizarre skin aging paranoia. Anyone have any tips for helpful products or brands?

Someone else is living your French life

2010-08-31T22:00:00.002-04:00

I'm pretty sure there used to be a blog with this title, but I can't find it anymore. So to the anonymous blogger who came up with the great title, thank you.

I think the original blogger meant the title to reflect the feeling that many expats in France have that their life there isn't what they thought it would be and that someone else is living the amazing, idyllic French life you thought you would have, complete with gorgeous boyfriend and perfect apartment overlooking the Seine, whereas your reality is more along the lines of a 9m2 former maid's room and long, lonely weekends.

I dealt with my own share of frustrations in France, but overall I had a great time. Now that I'm back in the US, everyone in France is living MY French life. It's la rentree, the time when everyone goes back to school and work, so so the fact that "my French life" is most likely over, or at least on a very extended hiatus, is on my mind a lot. I would be so ghttp://www.blogger.com/img/blank.gifrateful for one last run in with my monster class, or another altercation with the agent comptable, or even getting stuck in a transportation greve (strike). I find myself nostalgic for the bureaucratic garbage, the brain dead idiots in Picardie, my yogurt stealing neighbor, teaching, my coworkers, my students, being able to go to Paris whenever I wanted... the list goes on.

I'm insanely jealous of everyone in France. I'm fully aware that it isn't a perfect life, and I know there are plenty of problems one encounters living in France, but that's the life that I want. Everyone in France is living my French life. If you live in France, no matter how miserable you are, I WANT YOUR LIFE. Sadly the chances of anyone willingly exchanging lives with me are very slim, but if you're up for it, we can arrange something! My mom will cook you dinner every night, if that helps sweeten the deal. She's a fantastic cook. She also likes to bake :)

So guys, when the going gets tough, just remind yourself that there's a girl in Michigan who wishes she were dealing with your tough goings. On the other hand, I know that there are probably people who are, in fact, miserable enough that they wish they had my life. At least I have a good health care policy, a roof over my head, and food on my table every day. Sadly a lot of people can't say that.

On one level, my point is that we should all try to be more content with what we have because there's always someone worse off (and wouldn't it suck to be the person at the bottom of that list who really is the worst off?), and there's always someone who is jealous of you and wants your life.

On another level, I really am saying that someone else is living my French life and I would like it back, please. Hand it over.

How the Kindle makes bibliophilia worse

2010-08-28T15:44:00.000-04:00

I love books. I have always loved books. I used to beg my parents to read me my favorite stories over and over again. We aren't really sure exactly when I began to read because I would memorize books so quickly and be able to recite them by heart. I was the kid who was always reading under her desk during class. I never thought it was a problem until my last year teaching in France when I caught one of my students doing it. My first instinct was to think it wasn't that big of a deal, until I realized that it would set a bad example for the other kids to let him get away with it!

I still don't think it's a big deal.

My parents got me a Kindle for my birthday before I went back to France for a second year because I had trouble finding books in English in my small town, and even in Paris you aren't guaranteed to find the book you want. What an amazing present!! As long as I am somewhere with wireless I can get almost any book I want. It's amazing! One of my favorite features is the free sample feature. You can download the first several pages of a book for free to see how you like it before you buy it. I love it. I love being able to try out books.

I'm afraid I've become a bit of a Kindle addict! Real paper books don't interest me the way they used to because I love my Kindle so much. That's terrible. I know there are some books I could never read on a Kindle; any Jane Austen, for example. But I have several paper books that I need to read and have been meaning to read, and for some reason they just don't make me want to read them the way my Kindle makes me want to read. I also have books I've been meaning to order from Amazon that I haven't ordered yet because I'm so captivated by my Kindle!

Then there's the ability to browse for books! I can always have new books! All the time! I can look through hundreds of books a day! Their enormous store is always open! I can sit in bed and look for books! It's amazing! This is another reason why I don't want to read the paper books that I already have in my possession but have yet to read. I'm kind of addicted to looking at new books all the time! I don't know if it's the appeal of being able to look at all those different books all the time, or the idea that there might be something better out there.... I really don't know. I just know that I'm hooked on Kindle, and I may have been spoiled for real books forever!

One of my favorite books when I was a kid was a book of American tall tales that my mom's graduate adviser gave me. By far my favorite story was, and still is, the tale of John Henry. Paul Bunyan and Babe the Blue Ox are pretty cool too, but John Henry holds a special place in my heart. My friend Get Yourself Connected and his tale of machines taking over railroad work that used to be done by men reminded me John Henry and the great folk songs about him. The Boss has a pretty mean version of one on his album We Shall Overcome: The Seeger Sessions.

Jackpot! .... or not

2010-08-25T22:44:00.004-04:00

This week is chemo week AND photopheresis week, so I'm going in to the hospital every day for infusion. Yesterday I thought I had hit the cancer center jackpot: when I got to infusion I was sitting next to a cute guy who looked like he was my age! I can probably count on one hand the number of times I've seen a patient my age at infusion!

I was so excited, but he was with the nurse, so I decided to wait until she was done to say anything to him. But it turned out she had been taking out his IV because his infusion was done, and he stood up and left before I could even get out a simple hello!

Can't a girl catch a break?!?!?!?!

Meet the Wigs

2010-08-22T22:50:00.001-04:00

A few weeks ago I went to the wig bank at the cancer center and picked out a couple of wigs. These are the first wigs I've ever gotten in my whole six years of treatment. Usually I wear scarves.

Meet Aubrey!

Meet Karen!

As you can see they are very different from each other! My natural hair is dark and curly, so they're both quite a change for me, Aubrey in particular. I've also never had a hair cut as cool as either of these - the cool bangs, cool layering, etc. Usually I go pretty basic - long layers, some face framing, and that's it. The last time I had hair that long I was in high school! I prefer Aubrey; she's a little more fun, and looks better on me. Who would ever have guessed I'd look good as a red head?

I decided to get some wigs because I thought they might give me a little more confidence when I'm out in public or meeting new people. I've only worn them a few times since I got them, and the first couple of times I think I was more self conscious than I am just wearing a scarf! I was worried that the wig would shift and look funny on my head, or that it was easy to tell I was wearing a wig, that it looked terrible on me, that the hair was tangling, etc. I hadn't gotten wigs previously because I'd heard that they are itchy and hot, and because I like accessorizing my outfits with scarves. Turns out wigs are indeed itchy and hot! But I do like looking a little more "normal" when I go out in public. I blend in rather than standing out.

The other reason to get wigs is that despite the Rogaine my hair doesn't appear to be growing back. Reasons that my hair isn't growing back yet are: still waiting to grow back from the chemo I got eight months ago (unlikely), the chemo I'm getting now (which shouldn't affect hair growth), and hair gvhd. I know a few girls, all around my age, who have hair gvhd. One is totally bald, one has extremely thin hair (thinner than mine is now) and doesn't wear a wig, and one who has thin hair and wears a wig. Rogaine does say that it takes a few months to work, and I've only been using it for two, so there's still a chance that I'll see some regrowth in the next couple of months. I can also try a higher dosage of Rogaine and see if that helps (buy Rogaine for Men instead of Rogaine for Women. Because obviously my life isn't already embarrassing enough!).

I can't tell if my hair is growing back or not, but I am starting to lose a little bit of hope. I haven't totally given up, but I think it's best if I start trying to get used to the idea of being mostly bald forever because it's going to take a long, long time to get used to. I hate the idea of my hair never growing back. I really don't mind being bald for a few months; I understand that it's a necessary evil when it comes to chemotherapy and getting healthy. I comfort myself with the knowledge that it will grow back. But what if the hair loss is permanent, what do I say to myself then?

Of course, in the grand scheme of things, if I have to sacrifice my hair to stay alive, it's a small price to pay. It's just a really, really sucky price. I miss my hair. I miss washing it, running my fingers through it, the way I look with my hair, I miss it blowing all over my face when I roll the windows down in my car. I always liked my hair. Not to mention, if I thought I'd have a hard time finding a guy who would put up with the cancer thing, it'll be even harder to find someone who will put up with cancer AND permanent baldness. Imagine coming home to someone who looks like a cancer patient every day. I can't blame anyone who doesn't want to sign up for that.

It makes me extremely sad to think that I'll probably be mostly bald for the rest of my life. That every day I'll wake up and put on a wig, and then take it off at night. That I'll never see my natural hair again.

A small prayer to the universe: Can I have my hair back please?

I guess until then, Aubrey and I will be spending some time together. It is kind of fun to play dress up with wigs, but I really hope it isn't something I'll have to do forever.

Apparently I'm really old

2010-08-19T20:45:00.003-04:00

Last night at French conversation group I brought up this article from the New York Times about the phenomenon of 20somethings taking longer to "grow up" - be financially independent, getting married, having children, starting a career. I actually didn't think it was a very good article, but that is beside the point. I was sitting with a woman in her late 30s, a guy in his 40s, two college students, and one guy who just graduated from high school and is starting college in a few weeks. I summarized the point of the article, and the high school kid says "yeah, that's a big problem for my generation."

I looked at him and exclaimed "how old do you think I am?!?!" I know that to a 17 or 18 year old a 26 year old seems ancient, but let's keep in mind that the article was actually about my generation, not teenagers!

Kind of a hilarious story, right? I had a good laugh about it.

You know what else makes me laugh? I saw a recent picture of my French ex and he got fat and ugly! Bwahahahahaha. I'm sure it's super bad karma to be happy about it, but he was a major jerk, so I am getting a hefty dose of satisfaction out of his ugliness and weight gain. This one will make me smile for a long time!

Michigan's East Coast

2010-08-17T23:19:00.011-04:00

I spent a wonderful weekend near Tawas City with two lovely ladies from my Gilda's Club young adult group. There are a lot of inland lakes in this area and one of the girls recently bought a house on Round Lake.

The Sand Lake firefighters were having some kind of special weekend, featuring Fireman Burgers, games for kids, and a fireman water balloon fight! Unfortunately we missed out on that one.

There was also this funny Budweiser car at the festival thing.

In the evening we went into Tawas to wade in Lake Huron and look around at the town. It didn't take too long, there's only one main street!

I hadn't been to Lake Huron before, so I crossed another Great Lake off my list of lakes to visit. I've now at least seen all of the Great Lakes!

Although Tawas is small, it does have possibly the best store ever:

I didn't actually get fudge or ice cream here, but I had to take a picture of the sign!

My friend and her husband have a pontoon boat that we took out to the sand bar that divides Round Lake from Indian Lake, set up some chairs, and took turns enjoying the sun and kayaking across the lake.

Looking over the sandbar into Indian Lake. Indian Lake was several degrees cooler than Round Lake.

This is how we set up the chairs - yes, we were sitting in the water.

Kayaking. I'm in the orange kayak!

It was a great weekend! So relaxing, and I was really happy to kayak again, I haven't kayaked in years! The only kind of weird part was that there was hardly any cell phone reception in the area. I had no idea places like that still existed!

What a week!

2010-08-13T23:19:00.002-04:00

I had a busy week this week! Of course now I can't even think of what it was that kept me running around so much, but I felt like I was going non-stop. I think it's because I had trouble sleeping and was really tired all week. Why am I still awake right now?

I'm off to northern Michigan again for the weekend! Going to Tawas with some friends. It's a cancer chicks weekend. Pictures and stories when I get back.

Now off to bed!

Frustrated

2010-08-08T15:52:00.003-04:00

My doctor told me last week that my total maintenance chemo plan will last for two years. That means I'll be getting treatment until May 2012.

So I'm stuck here for another two years. I love my doctor and nurse, the hospital and all the staff here and have no desire to get treatment anywhere else. I feel that the team here is the best fit for me and I'm in the best place possible.

But.... then there's wanderlust I can't seem to get out of my system. Being tied to a specific place because of treatment frustrates me. It makes me feel like my life is not my own, that I have no self-determination, like someone - or something - else is in charge instead of me. I should be in charge. It's my life. It isn't only the idea that I want the power to determine where I go, but I love going different places and experiencing new things. I'm stuck in a rut here, living in the house I grew up in, in the same room, in the same bed I've had since I was six (yeah, I know, time to get a new one).

Part of the way I've been dealing with being stuck in treatment again is by imagining what I will do when I'm done. I like to think about going back to France, or different degree programs in different cities I can do. Above all I think about going back to France. It has almost a mythic quality for me. It's a place where I wasn't sick, where I was completely independent, totally in charge of my own destiny, working and traveling and doing all the things normal 20somethings do. I've never had that experience in the US. I spent most of college in treatment or recovering from my first transplant and then I ran off to France. In the US I feel perpetually stuck in adolescence. I can't even enroll in classes and do something productive with my time while I'm stuck here because I have to go to the hospital for so many different appointments. It would be too difficult to schedule. Maybe next semester or next year? And I know I could take online classes, but that isn't that same. I want to go OUT and do things, not be stuck in the house all the time.

I'm just disappointed. I need some change. I am going out and doing things, meeting people, but that's also a frustrating experience because one of the first questions anyone asks is "what do you do?" And I have nothing to say to that. I usually say that I recently got back from teaching English in France, but that was a year ago now. It just reminds me that the majority of the world is living and doing productive things and I am not. It's embarrassing, and yet another reminder that my life has taken a totally different path from anything I ever thought it would.

Everyone join in loud and clear: THAT SUCKS.

Guess it's time for a new two year plan. I like to mope about my problems for a couple of days and then get on with things, make some positive changes. Right now I'm moping, and tomorrow I'll regroup. France will still be there in two years, right?

Summertime in Northern Michigan

2010-08-05T21:22:00.009-04:00

Views from our balcony over the west bay

Some history on Old Mission Peninsula

2010-07-31T16:35:00.019-04:00

This is a terrible map that I lifted from Wikipedia, but let's pretend it's a good map for a second. See the bay up where the "pinky" of Michigan is? That's Grand Traverse Bay. It's separated by that little red line, the Old Mission Peninsula, into the East and West bays. Traverse City is on the west bay, right next to the Old Mission Peninsula, and the other peninsula between Lake Michigan and the West Bay is the Leelenau Peninsula. Old Mission Peninsula is where the wineries we visited are located. Got it?

On Saturday we drove all the way up Old Mission Peninsula to visit the Old Mission Point Lighthouse and found a bunch of very interesting historical sites while we were there. The residents of Old Mission are really proud of their history and very keen to preserve it.

The lighthouse was built in 1870 and decommissioned in 1933. Did you know that Michigan has the second longest coastline in the US? Alaska has the longest.

Michigan has the most lighthouses of any state! Some are still used but are now automated, some have been reopened as museums, and some have been abandoned. Many of the abandoned lighthouses have dedicated groups trying to raise money to renovate them. If you're familiar with the Gordon Lightfoot song "The Wreck of the Edmund Fitzgerald," you know why lighthouses were so vital on the Great Lakes. It was an extremely important shipping route with lots of dangerous shallow shoals, bad storms, and little islands. Lighthouses played a vital role in keeping the sailors (and cargo, of course) safe.

This was taken from a mud flat close to the coast. See how shallow the water is here?

In the same park as the lighthouse is the Hessler Log House, a log cabin that was built between 1854 and 1856 by Joseph and Mary Hessler, some of the first white settlers on Old Mission. They have a really nice audio piece that explains about the cabin and the household items that have been put in it. It's like a mini-museum of the lives of early settlers in this part of the country.

This one was taken behind glass so it isn't very clear but you can see the sort of household implements they would have used. The stove was used mostly for heating. Settlers usually put the kitchen in a separate building or in a separate room so that the house wouldn't get too hot in the summer.

Next we went to the Dougherty House. Reverend Peter Dougherty arrived on Old Mission in 1839 to provide education and religion to the local Odawa and Ojibwa (also known as the Ottawa and Chippewa), who had signed a deal with the government to give up their land to be settled by whites. The house was built in 1842 with help from the local tribes.

The house has been continually used, either as an inn, private residence, or storage, since it was built. The Old Mission Peninsula Historical Society is currently renovating the house and preparing to open it as a museum. We were there on a Saturday so there wasn't any work going on, but I did get to snoop around the property and take pictures.

The back of the house showing the summer kitchen and the storage shed. You can see the ongoing renovation work. There are still a lot of old barns in the area so they often use period wood from those old barns in restoration work.

The outhouse. They made a big deal out of the fact that it's a three seater - two adults and one kiddie seat. One of the few three seaters in Grand Traverse County!

Next stop was the replica of the church and school that Dougherty and the Native Americans built together for his mission work. Eventually the mission was moved to the Leelenau Peninsula on the other side of the bay and the church was moved there too, log by log. If I remember correctly that church still stands and is still used.

Next to the replica of the church is the Old Mission General Store, which has been in this building since 1839! It's very cute on the inside, kind of dark, very old-timey and rather cluttered with things like old lanterns, coon skins, candies, and their homemade cherry salsa and preserves.

We also stopped briefly at Haserot Beach, a small, very picturesque beach located pretty far up the peninsula. You have to know about it to end up there.

There was also a cute playground for the little kids there.

2010-07-30T22:59:00.003-04:00

It's been a busy, tiring week. Chemo, ECP, PET and CT scans and a bone marrow biopsy. Yikes! Obviously that hasn't left me a lot of time to post.

But I did want to share that all my scans were clean! I was so worried but it all turned out well. What a relief! Now I get to relax for a few months until the next set of scans....

Moomers and Tall Ships

2010-07-26T20:39:00.019-04:00

Moomers is the legendary local ice cream place in Traverse City. They were voted best ice cream shop by Good Morning America Weekend for their signature flavor, featuring - what else? - cherries!

Moomers is actually a few miles out of Traverse City and their adorable shop is right next to the fields where their dairy cows live.

Unfortunately Moomers only has this one little store, but you can buy their ice cream at other shops in the Traverse City area. Otherwise you can order it online and have it shipped to you. We can't figure out why they don't expand and sell their ice cream more widely because it is delicious! Super creamy, not artificially sugary at all, and the flavors are super creative.

The Traverse Tall Ship Company has several different themed cruises around the West Grand Traverse Bay in their tall ship Manitou, which is a replication of an 1800s schooner, complete with masts and sails and everything. They even offer a Moomers cruise where you can sample five different flavors and have a relaxing sail around the bay. This was hands down our favorite part of the trip! The sail/cruise/whatever you want to call it was so relaxing and enjoyable, the weather couldn't have been more perfect, the scenery was gorgeous, and we got to spy on the enormous multi-million dollar homes on Old Mission Peninsula.

On the Manitou

Nice views, huh?

One of the five samples. This one is chocolate peanut butter chunk. We also sampled blue moon (like a blue raspberry flavor), cookies and cream, black cherry, and a special flavor they make for the cruise called Manitou. It's coconut, chocolate chips, almond, and marshmellow swirl.

The pirate in the Tall Ship offices. Arrrrggg!!!

Wouldn't you like to live in one of these?

Cherry Capital

2010-07-26T17:45:00.006-04:00

Traverse City calls itself the "Cherry Capital." Even the airport (a few short runways for tiny planes and private jets) is called the Cherry Capital Airport. The northwest corner of Michigan is the headquarters of cherry production in the state, and more specifically tart cherries. We produce 75% of the nation's tart cherry crop and also a significant part of the sweet cherry crop. Basically, cherries are a big deal here and we passed countless cherry orchards on our way up Old Mission Peninsula.

Traverse City even has the National Cherry Festival every summer to celebrate all things cherry. We were there for the cherry festival three years ago. It's a very cute summer festival with golf tournaments, activities for kids, an air show, cherry pie eating contests, cherry pit spitting contests, and of course a parade featuring the Cherry Queen!

You can buy just about anything with cherries on it up here. Literally anything.

This is from The Cherry Stop, where you can buy clothing and household items with cherries on them, cherry lotions and bath products, and of course a variety of cherry food things. They also have a cherry wine tasting room.

Cherry Republic is a company that produces an enormous variety of cherry food things. Cherry jams and jellies mixed with every other fruit you can think of, cherry barbecue sauces, cherry salsas, cherry peanut butter, dried cherries with or without chocolate... lots of stuff.

If you're coming to Traverse City, come hungry!

So far...

2010-07-22T10:47:00.000-04:00

... we've done a couple of wine tastings. Yes, there are vineyards in Michigan! Traverse City is almost exactly at the 45th parallel, which apparently is where some of the world's best wine regions (like Bordeaux) are located. Unfortunately Michigan can't boast any wines like that, but we have some that are pretty good! I do not, however, recommend any of our red wines, and not just because I prefer white, but because they are not good. Don't waste your money. The best wines from the area are reislings or specialty cherry flavored wines and liquors.

We drove up Old Mission Point Peninsula and stopped at two different vineyards. There are probably a dozen different ones in the area, but the two we stopped at are supposed to be the best. We started at Chateau Grand Traverse and were not at all impressed with their offerings. We tried wines that had won all different awards but honestly, most of them weren't that good! We ended up buying a cherry riesling and a regular riesling.

We also stopped at Chateau Chantal, which is on a hill in the middle of the peninsula with fantastic views on both sides to the East and West Grand Traverse Bays.

Antique wine pressing equipment

We were much more impressed by the offerings at Chantal and bought a riesling, a pinot blanc, a sparkling cherry wine, and a cherry port. I'm glad that we supported Michigan businesses and that we have all these good wines to drink!

Michigan is the number one producer of tart cherries in the US, and the cherries are mostly grown in the Traverse City area, which prides itself on being the "cherry capital." That's why all of these cherry wines and other cherry products are such a big draw. More on that in another post. We ended our trip by stopping at a roadside cherry stand and buying these amazing cherries, some of the best I've ever had. Fresh and local really is better! The owner told us it's the oldest fruit stand on the peninsula.

The bright red cherries are tart cherries and you use them to make pies

Sweet cherries and golden cherries. I'd never had golden cherries before. They're a little bit tart, very delicious!

On the road again!

2010-07-17T23:18:00.003-04:00

This time to Traverse City, Michigan! For a whole week!

I took this picture from the top of the Grand Traverse Lighthouse waaayyyy up at the tip of the "pinky" when we were there three years ago.

Yes, Michigan is shaped like a mitten (the lower peninsula is, at least). Look it up on a map if you don't believe me! Michiganders are famous for using our hands to show you where we're from and where different cities in our fine state are located.

And I realized tonight that this will be the first week since the end of September that I don't have anything to scheduled at the hospital! (knock on wood) Of course if I were in town I would have had scans and appointments and things, but I am going away on vacation, so we put all of those off until next week. Another river crossed!

Hope you all have a good week, and we'll see if I'm motivated enough to post photos while I'm up there.

Happy birthday to me!

2010-07-15T14:34:00.007-04:00

A bit of shameless self promotion, but it is kind of a big deal that I'm able to celebrate another birthday today! I'm very happy to make it to 26!

And of course, what kind of celebration would it be without a little ICE CREAM?

Hope all of you have wonderful days today!

July

2010-07-12T22:38:00.002-04:00

July hasn't been the best month for me over the past six years. Here's a quick summary of why, with the rest of my cancer timeline:

July 6 2004 - diagnosed with Acute Myelogenous Leukemia

July 7 - admitted to the hospital. Port placed.

July 8 - first day of weeklong 7+3 induction chemo

July 15 - last day of chemo. 20th birthday. Party in the hospital, complete with balloons.

Rest of July - inpatient. One central line infection, antibiotics, collapsed veins, fun times. Remission.

September through January - weeklong inpatient chemo sessions each month, followed by two clinic visits plus blood and platelet transfusions a week

January 2005 through early July - back to school for second semester junior year

July 15th 2005 - 21st birthday. Had the appropriate amount of 21st birthday fun :D

July 18th 2005 - prompted by no concrete symptoms but just a general feeling of something being wrong I schedule a clinic visit. Decide to stick around for my blood draw results despite the fact that everyone told me I was fine. Platelets came back abnormally low. Had a bone marrow biopsy. I know I've relapsed (platelets don't drop that low for no reason) but I don't get the official results until...

July 22nd - results come back showing an early relapse.

I enter the hospital for another month in August to get salvage chemo. Have to get a transplant this time. Brother and sister don't match. In October I recieve the good news that they've found a match for me. Another relapse, but early enough that we decide to proceed with transplant. Move to Boston with my mom for transplant.

November 4th - transplant day, second birthday. Goes very well even though it was very hard. Return home to Michigan in March.

July 2006 - Live in dread the whole month that something terrible is going to happen. Paranoid searching of entire body every day for bruises, petechiae, anything. Miraculously nothing happens and I make it through the month.

Go back to finish up school in January 2007, graduate in May a year behind schedule. Thanks AP test scores, you gave me a semester's worth of credit and enabled graduation only a year late. Best $300 I ever spent!

July 2007 - my transplant buddy Tali passes away from severe GHVD. I'm fat and crazy from steroids.

September 2007 through July 2009 - move to France to teach English

And then you know the rest of the story - relapse in October, transplant in December, recovery since then, blah blah blah.

Nothing really terrible happened in July of 2008 or 2009, but I feel like I got away with something.

I have dreaded the arrival of July since my first relapse. It's a little more than just an unlucky coincidence to get cancer in the same month two times, and only a year apart! Plus my friend Tali passing away during July. That's three years out of four where really bad stuff happened during the month of July. So every year when July rolls around, I get pretty nervous. I worry about relapsing, I worry about my friends relapsing, I worry about anything else bad that might happen. I don't even want to celebrate my birthday because I'm afraid of attracting the evil eye. Don't get me wrong, I'm always very, very happy to pass another birthday, but Jews are a very superstitious people, so I was raised believing in the evil eye and the ability to attract bad luck to yourself, and it seemed better to quietly mark the day with myself rather than making a big deal of it. You know, let it pass under the radar.

July just makes me nervous.

This year my attitude is a little bit different. I feel like I should celebrate my birthday. I'm turning 26! That's amazing. Who knows how many birthdays I will have left to celebrate, first of all, and second of all, I've been beating off this very aggressive leukemia all year, I think it's a good time to celebrate life and living. I would like to do something nice for my birthday, but again, nothing too elaborate, just something enjoyable. I'm not totally sure what I'll do yet. My mom always makes a special birthday dinner and cake, and maybe we'll go to the zoo together during the day. I like the zoo.

But I still have this sinking feeling because it's July, and because I have PET and CT scans and a bone marrow biopsy coming up at the end of the month. I wish I had thought earlier to ask my doctor if I could schedule them a week later. I would be nervous about my upcoming tests no matter what, but because it's the dreaded month of July I'm more nervous than I would be otherwise. I have no reason to think there is anything wrong. My blood work looks good, I'm feeling good, I don't have any symptoms..... but I didn't before, either. The first time I relapsed everyone thought I was being paranoid, and when I relapsed in October everyone was shocked.

So, I don't know, when I think about the scans I get upset, when I think about celebrating my birthday the little voice in my head says "are you sure that's a good idea?" but when I think about not doing anything I feel like that's wrong because I should celebrate getting older. Man am I going to be happy to get gray hair and wrinkles!

I try to not think about any of this as much as possible. Nothing like avoidance and denial to improve your mental state! The scans are going to happen no matter what, so there's no point in worrying about them until I'm getting the results from my doctor the next day. Easier said than done!

Now to find a way to turn off my brain because once I start thinking about being nervous I can't stop thinking about it!

Fashion diapers and stories from the baldies

2010-07-10T00:25:00.004-04:00

I absolutely love this commercial. I laugh every time I see it!

On TV they say "full of fashion" instead of "full of shit." I think full of fashion is much funnier, but the TV-safe version isn't on youtube.

I'm starting to get a little worried because my hair is taking a really long time to grow back. They say it takes 2-3 months to fully regrow after chemotherapy and that has been my experience in the past, but this time around it's been seven months since my transplant and I'm still waiting for full regrowth! About a third to half of my hair has regrown, so I have hair all over my head, it's just really thin and doesn't fully cover up my scalp. It's actually getting relatively long now, long enough that if I had full regrowth I would no longer be wearing scarves to cover my head. I'm getting nervous that the rest is never going to come back! I have heard from other patients that one of the chemo drugs I got before my transplant makes your hair take a really long time to come back, and I am getting chemo now (although normally the drugs I'm getting shouldn't affect hair growth), but it is also possible to have gvhd that prevents your hair from growing. Obviously that wouldn't be the worst tragedy of my life, things could be a lot worse, but I really just want my hair back already! I have enough other crap to deal with, it would be nice to not have to worry about hair gvhd and being half bald for the rest of my life!

So, when I went to the doctor on Tuesday I brought the hair problem up. My nurse practitioner took a look at my head and said it would probably be worth trying some drug called minoxidil, which is available as a topical liquid that you apply to your head. I'm thinking okay, minoxidil, this sounds like a good thing, hopefully this will help stimulate those little follicles to start working again. The nurse writes me a prescription for the minoxidil and I go to the pharmacy to pick it up. Turns out minoxidil is Rogaine!!! So now I'm using Rogaine, hopefully it will work and within another few months I'll have a full coverage.

I reached my peace a long time ago with the fact that I have to lose my hair to save my life. It's honestly not such a big sacrifice to make in the grand scheme of things. It doesn't bother me that much to be bald, and a lot of that is due to my dad always being totally fine with his baldness and making it a joke. The regrowing phase is annoying because you end up with so many terrible, terrible hair lengths and weird frizzy Jewfros. The change in appearance is hard to deal with because not only are you trying to process everything medical that cancer involves, you have to look in the mirror every day and see a stranger staring back at you. It's dehumanizing and can make you lose your sense of self on top of everything else you have to deal with. But like I said, keeping the big picture in mind, it's worth it, it's not a big deal, it happens and you get over it. It saves time getting ready in the morning, I save money on hair products. If I'm ever on the run from the police I can hide out in the melons at the grocery store.

I really don't like to wallow in self pity or be all "woe is me" even though my situation is admittedly very shitty, but it would be nice to catch a break with the hair situation. Although again, if it's a trade off between life and hair, life wins every time. How fun to have to make that choice and qualify everything that happens as living vs terrible side effect. I should be getting a fun summer hair cut, but no, instead because it's been so hot out I am debating going without a scarf and feeling like even more of a freak than I already do.

But Rogaine is funny! I can get mileage out of that joke for at least a couple of months.

Six Years

2010-07-06T12:11:00.002-04:00

Six years ago today I walked into an exam room and a doctor told me that I had leukemia. I was admitted to the hospital the next day for the first of many month-long hospital stays, and the day after I started chemotherapy. A week later I finished my first ever round of chemo and celebrated my 20th birthday.

A lot has happened health-wise in six years. I relapsed a few times, had a couple of transplants, got all kinds of crazy treatments, racked up several more stays in the hospital, had lots of blood and platelet transfusions, spent countless hours with various healthcare providers. But the most important thing that has happened in the past six years is that I LIVED. Despite leukemia's ongoing efforts to get rid of me, I am still here.

Up yours, jackass.

Mackinac Island Part Two: The Grand Hotel

2010-07-03T11:15:00.001-04:00

The longest porch in the world! I think it is 600 feet long.

Another shot of the porch, this time with a little sun shining on it. I had to cleverly use the branches to shade the camera from getting too much sun. Most of the time we were on the island the weather was cloudy and/or rainy, but on Saturday afternoon we had a lovely few hours!

View looking off the porch towards downtown (which you can't see because the Grand is on a big hill and surrounded by a lovely garden).

As part of our Arts Weekend package we had a lovely reception every evening before dinner. They offered lots of different types of alcohol, including champagne, fresh fruit and vegetables, cheese, crackers, shrimp, chicken skewers, and these absolutely scrumptious little spinach, sundried tomato, and feta mini quiches. They were so good I was forced to have about five!

The view looking down the porch. We were serenaded by classical jazz during our reception hour, and always served by an impeccably dressed wait staff. As my dad says, it is all very civilized - you are served a full five course meal by uniformed waiters, there's a special wine staff, the food was delicious and elegant. I especially loved the fact that there were always activities in the hotel, which made it feel like an old time vacation resort for the very wealthy. There is afternoon tea, and after dinner you can have an espresso, there's dancing with live jazz music, and of course more cocktails. The jazz band plays during dinner too. There are shops in the hotel where you can buy all kinds of knicknacks, and lots of public areas where families liked to play card and board games or just relax. Did I mention that after 6 PM you have to be dressed in your finest? Oooh la la!

The dining room at break fast on our last day. Aren't the mirrors wonderful?

Looking out the window from the dining room onto the porch.

Shots of the parlor, where afternoon tea, espresso, and the evening cocktail take place.

The room. It was quite large and perfectly set up for my parents and me. You can see we had a nice living area as well as two good sized beds. The only thing that I found a little disappointing was the decoration of the hotel. I was expecting more of a Victorian influence but it was more modern English cottage with big, bold prints and colors that sometimes clashed. But this is a minor criticism. The service is really the big selling point and it was really fantastic.

Commemorative pictures from the filming of "Somewhere in Time" in on of the lobbies.

Shots of the garden in front of the Grand.

A shot of the Mackinac Bridge (The Mighty Mac) at sunset from the porch of The Grand. The Mighty Mac links the upper and lower peninsulas of Michigan and is the third longest suspension bridge in the world and the longest in the western hemisphere.

Mackinac Part One: Fudge

2010-06-30T20:13:00.018-04:00

I think to make the posts more readable and organized, I'm going to divide them up into a few parts. So to start off, a review of the fudge!

There are several different fudge companies on Mackinac: Ryba's, Joann's, May's, Murdick's, Murray's, and Sanders, which you've already heard about. It's a Michigan-wide company, although I've never seen fudge at their stores down here, and the other ones are all home grown on Mackinac. We didn't try Murray's because my parents said the last time they were up there it was terrible. I figured, no problem skipping out on bad fudge.

There are several possible problems with fudge. It can be too dry, too sugary, or too grainy. Naturally the fudge will dry out if it isn't kept properly covered after you buy it, so you have to rewrap and store it carefully. It's made on marble slabs in the store. The hot fudge is poured out on the marble slab and then the bakers scoop it up and fold it over, building it up into a long brick until it cools and holds its form. Then it is cut into slices, which you can have cut in half again when you buy it so that you can try multiple flavors. Most stores will require you to buy two halves to fill up a box. The fudge stores all sell other candy items as well - caramel corn, regular popcorn, usually ice cream, homemade candies, peanut brittle, etc.

So, here are my reviews of fudge, from worst to best:

Murdick's

Murdick's fell into the "too grainy" trap. We got peanut butter chocolate chip (on the left) and double dark chocolate. The double dark chocolate wasn't chocolate-y enough, and in addition both were a little dry. The chocolate chips in the peanut butter one didn't melt enough so they were kind of hard (they're only in the very center of the slice so you can't see them very well in this picture). Murdick's is probably not worth the trip if this is their typical standard of product.

May's

May's claims to be "the family that made fudge famous." The first problem with May's is that they wouldn't cut the slabs of fudge in half so that we could try a couple of flavors. That was annoying. Their fudge was not at all dry, very soft and fudgey, but the chocolate peanut butter flavor that we tried was more caramel flavored than chocolate flavored.

The next three I have a hard time ranking in any order because they were all so delicious! It's impossible to choose between them!

Sander's

We got the peppermint patty flavor. WOW. Creamy, fudgey, delicious flavor - a definite must-have if you find yourself on the island! Sanders features all kinds of other unusual flavors that are a depart from the typical chocolate, chocolate peanut butter, vanilla walnut, etc.

On the top left is chocolate peanut butter, bottom left is cherry coke, the bottom right is cherry vanilla swirl or something like that, and the top left I'm not sure.

Chocolate raspberry (which we tried a sample of and was also DELISH) on the top left, mocha cafe on the bottom left, German chocolate on the bottom right, and vanilla pecan on the top right.

Joann's

Joann's wins the prize for cutest store. Unfortunately my photo didn't turn out very well, but I think you can get the idea, and you can see my parents in the picture!

And I got a nice picture of the guy cutting the fudge slabs. The other great thing about Joann's is that they'll give you any warm, melty scraps if they're available when you walk in. YUM!

Joann's also has some pretty unusual flavors:

The labels are pretty easy to read on this picture.

Here on the top shelf we have double dark something with nuts, double dark without nuts, and raspberry truffle. They also have rocky road, kahlua, butterfinger, and several sugar-free selections. We ended up getting the double dark chocolate (had a warm, gooey sample and just couldn't resist!):

And chocolate cherry and maple. Joann's was the only shop where they had plain maple and didn't require you to buy maple walnut, which is a double whammy for me. Not only do I not like nuts, but since my transplant I've developed an allergy to walnuts!

Joann's is creamy, soft, and delicious. Not grainy, not too sweet, really good flavor of everything, but the double dark chocolate was especially fantastic, much better than Murdick's.

Ryba's

Ryba's is practically an empire and owns half the downtown area! Their characteristic pink and brown logo and awnings are all over. They have at least four fudge shops, two bicycle rental shops, and a breakfast restaurant!

Ryba's also had delicious, soft, not at all grainy fudge. We tried the gourmet oreo cookie flavor and the chocolate peanut butter, which was much richer and more chocolatey than May's.

Of course I had to try the ice cream too! Most places carry a brand called House of Flavors, which is made in Ludington, MI, on the coast of Lake Michigan. The ice cream was fantastic! I tried three flavors while we were there: cookies and cream, black cherry, and peanut butter Mackinac Island fudge. All were superbly creamy but not too rich, had a really good flavor, and weren't too heavy either, they didn't sit like a rock in my stomach like ice cream sometimes can. The standout winner was the peanut butter Mackinac Island fudge, which had little pieces of fudge mixed in with ribbons of caramel and peanut butter in vanilla ice cream. It was AMAZING. I would go all the way there just to get this flavor again! It isn't actually listed on their website and I have no idea why, because it's amazing. AMAZING.

As a side note, a lot of the fudge places list flavors on their websites that I did not see in the stores, so I don't know if those are premium flavors that they make on request or for special occasions or what. Also, what's with all the nuts in the fudge? I'm going to sue them for discrimination against people with nut allergies!

Next stop: Mackinac Island!

2010-06-24T20:24:00.006-04:00

I had a wonderful time seeing my friend Theresa in San Francisco this past weekend. I didn't do anything touristy at all - it wasn't the point of going, and also, the weather looked like this most of the weekend:

I worked like a maniac to finish an afghan for her before I got there, and it turned out rather nicely if I do say so myself:

Unfortunately the colors don't show up very vivdly in the photo but it's a really beautiful, rich purple, a purple-white blend, and of course white.

I was so happy to spend some time with T. It was absolutely wonderful to see her, we had a great time together, and I was just thrilled that she was feeling well enough to have me come visit. She is an amazing friend and I'm so lucky to have met her.

This weekend I'm off on another trip to Mackinac Island (pronounced Mackinaw). It's located in the Straits of Mackinac, between the Upper and Lower Peninsulas of Michigan, and where Lakes Michigan and Huron join. Mackinac Island is a state park where motorized vehicles aren't allowed, except for some emergency vehicles and I think snow plows or snow mobiles. It's Michigan, it snows a lot. Mackinac is very famous for its fudge. I will certainly be sampling some this weekend and reporting back! And OF COURSE I'll be keeping my eyes peeled for ice cream too.

If you've seen the movie Somewhere in Time with Christopher Reeve and Jane Seymour, it was filmed on Mackinac at The Grand Hotel.

I'm especially excited for this visit to Mackinac because we'll be staying at The Grand! I think it will be very elegant. You have to dress for dinner and they have afternoon tea!

The hidden benefits of getting cancer: my parents keep giving me "we're sorry you got cancer" presents. Ha ha.

I'll be sure to take lots of pictures! Fingers crossed for good weather!

On the road and treatment updates

2010-06-17T22:15:00.002-04:00

I can't remember if I've posted yet about my maintenance chemo plan, so if I have, I'm repeating myself. Sorry! We've always had a maintenance chemo plan in the works because I have such a high chance of relapsing again. Although we hope that all the cancer cells are gone, there is no way to know how many undetectable cells might be left, and past experience (meaning the fact that I have relapsed a few times before) tells us that they are probably still there. And of course we found out in April that yes, there are in fact some bad boys still hanging around, when leukemia showed up in my central nervous system (CNS), where it had never been before. So my doctor decided it was time to put the plan into action before the leukemia started growing anywhere else.

The maintenance plan has two arms. First is the CNS leukemia treatment arm, which is an injection of a long acting version of a drug I've had many times before, ara-C, into my spinal fluid. Yes, they stick a big needle into the sac of fluid at the base of my spinal cord. Luckily I get this done under sedation so I have no idea what's going on! That's how I like it. Chemotherapy doesn't cross the blood/brain barrier very well so a direct injection into the spinal cord is the most effective way to take care of CNS involvement. I've been getting this treatment every two weeks since the beginning of May. After my treatment on July 13th, provided I am negative for CNS leukemia, we'll switch to treatment every three or four weeks and gradually space them further and further apart. This will continue for a year maybe?

The second arm is geared towards the rest of the leukemia that might be hanging out anywhere in the rest of my body. I'm getting a drug called azacitidine (brand name Vidaza), which I get for five days in a row one week a month. The infusion of the drug itself only takes ten minutes, but of course I have to get my blood drawn, wait for the results, wait to be called back to infusion, wait for the drug to come up from pharmacy.... it ends up being a two to three hour thing. I always bring a book or Sudoku or crochet or something else to occupy myself, but even so the waiting is ridiculous! The Vidaza infusions will probably also last for about a year and we'll be gradually increasing the dose to kill more cancer cells.

Luckily these drugs haven't affected me too much. They're quite mild, actually. I only had a little big of nausea after my first round of the intrathecal chemo (the spinal chemo), and on weeks when I get both the intrathecal chemo and Vidaza I'm more tired than usual, but otherwise I'm eating and doing things and feeling pretty good. My blood counts drop a little bit and my liver enzymes go up a little but that is to be expected.

My biggest problem has been with concentration. On weeks when I get chemo I feel completely unable to focus and very ADD. I can't sit still, I can't concentrate very well on one-on-one conversations, I get bored easily and need new activities all the time. It lasts for about 5 days. I had been blaming this side effect on the intrathecal chemo because it's a direct drug injection into the CNS, it seems like a big "no duh" that it would affect brain function and concentration. This week though I've felt pretty normal! So either my brain is getting stronger and conquering the nasty chemo, or the real problem is the Vidaza, or the combination of the Vidaza and the ara-C. I'll have to see what happens in a couple of weeks when I get both of them. "Chemo brain" - the difficulty concentrating, difficulty analyzing, difficulty with memory, etc - is a well documented side effect of chemotherapy and for some people can last a very long time or even be permanent.

This weekend I'm heading out to San Francisco to visit Theresa. My parents are coming along too because I'm not sure how much she'll feel like having visitors and if she's not up for seeing me I'll at least have people to do some sight seeing with! I haven't been to San Francisco before so it's kind of exciting. We're leaving tomorrow and coming back Sunday morning, so it's going to be a very quick trip and there definitely won't be much time to play tourist, but it's fun to have a little getaway!

Have a good weekend everyone!

Book Recommendations

2010-06-13T23:39:00.002-04:00

I love to read and right now I have lots of time to read. Here are some books I've enjoyed over the past few months. Another day I'll do my all-time faves.

The Georgia Nicolson series by Louise Rennison - I've already written about how much I love these totally mindless pieces of fluff. Think Bridget Jones set in high school. I find these books hilarious. I just finished number 7 in a series of 10 and I'm already sad about the eventual end of the series! Seriously, if you're lookin for something light, enjoyable, and wanting to laugh at angsty teenagers being ridiculous, these books are amazing.

The In the Merde series by Stephen Clarke - amazingly enough I'd never read these before, and now I don't know what took me so long! They are hilarious books about an English guy who moves to France and has all sorts of encounters with the French language, French bureaucracy, and French people that anyone who's lived in France will be familiar with. Not so sure how funny they would be to someone who doesn't know the French language or hasn't spent time in France, but they are highly recommended in any case.

The Guernsey Literary and Potato Peel Pie Society by Mary Ann Schaffer and Annie Barrows - this book was sent to me, in English, by someone in France. I just think that's funny. This is an epistolary novel about the German occupation of the Guernsey Islands. I love the tone in which it is written. The characters are unique and amusing, the story is touching and funny, and it will stay with you for a long time. Obviously there are some sad and shocking events, but overall I loved the book and tried to read it slowly so that I wouldn't finish it too quickly.

Major Pettigrew's Last Stand by Helen Simonson - I liked this book much more until the ending. The ending almost gave me a heart attack, it was a very startling break from the tone of the rest of the novel. Until the ending though, I liked it a lot. The story itself is very interesting, though the humor is pretty dry. I wouldn't necessarily recommend it to everyone. The book begins with the death of Major Pettigrew's brother and the possibility of reuniting two valuable guns that his father divided between the two of them when he died. The gun becomes a symbol of the Major's attempt to maintain the traditional values he was raised with in the face of a changing world that has become all about materialism and money. He also has to confront racism in small town England. Check it out for yourself.

The Immortal Life of Henrietta Lacks by Rebecca Skloot - this book is absolutely fascinating. Normally cells have a set number of times that they will divide, and then they die. Having immortal cell lines that don't die is very important for scientific research. Henrietta Lacks was a black woman with an extremely agressive cervical cancer who "provided" the cells that became HeLa, the first immortal cell line. HeLa cells have been used to research a huge variety of things including the polio vaccine and cancer treatments. Nearly every lab in the world that uses cells in their research has at least some HeLa cells, including my mom's lab. This book is about Henrietta Lacks, her family, the history of cell culture and many bioethics laws, and the ethical issues raised by her case. I highly recommend this book. Everything is explained clearly and concisely so even if science isn't your thing it's easily understandable.

Anyone else have any book recommendations? I'm almost done with The Immortal Life... so I need some new ideas for books! Preferably happy, not too dramatic books. I have enough drama in my life, I don't need to read about anyone else's drama.

Internet personalities

2010-06-08T16:51:00.005-04:00

If you've ever tried to learn a foreign language, you're familiar with the idea that you can become a different person in that other language. You don't "sound" the same. It's harder to make jokes or your sense of humor may just not make sense to native speakers, it can be difficult to string a coherent sentence together, your tone of voice changes, your vocabulary is more limited and you make grammar mistakes so that you sound like a small child instead of an adult... the list goes on. Eventually with time, practice and immersion in that foreign language you will be able to express yourself as you would in your native tongue but it is not easy to reach that point.

This isn't actually a post about how far my French skills have fallen and how I need to practice more often, although those are both true facts. I was thinking about another medium through which we sometimes have trouble expressing ourselves, and that is the internet.

It's no longer weird to meet people on the internet, like it was back in the day when we first got AOL at my house and my parents wouldn't let me use chat rooms. They were right, of course, but I thought it was terribly mean of them because my friend was allowed to use chat rooms at her house. Everyone meets on the internet these days. Almost everyone can be found with a Google search. The question is, what picture of ourselves are we presenting to the world on the internet? How do we communicate ourselves, our personalities?

Take me, for example. I have never met the majority of people who read my blog in person. I imagine that you all keep coming to read this because you like me, otherwise you wouldn't waste your time here! But if we were to meet in person would we actually get along? You might find that I'm totally different in person than I present myself as on my blog! I like to think that this blog represents my personality and I strive for a more or less conversational style when I write my posts, but I really can't judge how I'm perceived by other people, can I? In person you might find me totally annoying. Maybe I'm so socially inept that it's awkward to spend any amount of time with me. Maybe I have strange mannerisms. Maybe I make a lot of stupid jokes. Maybe I'm just stupid (I really hope that isn't true!). No matter how much I think this blog is a more or less true representation of me, there are of course pieces that are missing, and pieces that can't be known without actually meeting someone face to face.

The same rule holds true for twitter, facebook, and of course internet dating. It makes sense to date on the internet: you can find someone with common interests and goals and whatever. It just seems that it's so easy to lie on those websites and represent yourself as someone else. Take profile pictures, for instance. I would bet that most people pick the one picture taken 5 years ago where they look like a supermodel even if since then they've gained 300 lbs and developed a disfiguring fungal growth on their face. I have never done online dating but I fully admit that if I were on a dating website that's what I would do. I'm still mostly bald, I'm not about to put a picture of my bald self out there for everyone to ignore. I can make myself feel bad enough without having anonymous jerks on the internet do it for me! And what about those intangibles that aren't communicated through dating profiles? I doubt there is a box to check for "inability to feel compassion" or other personality quirks that might be deal-breakers.

What if the personality you present on the internet is much more annoying than your real personality? I think about people - well, one person in particular - who when I was on twitter used to complain constantly about everything. Now I have a bad impression of this person and I have no idea if it's a correct impression because I have only met them once. But I'll tell you what, I have very little desire to meet them again because of the personality they presented on twitter.

Do you think your internet footprint represents who you are? Do you keep your personality concealed online or do you let it all hang out? Do you think you'd like me in person?

Self medication FAIL

2010-06-07T20:48:00.004-04:00

Note to self: do not stop antacid medication ever again.

I've been taking a medication called protonix to control my acid reflux for oh, four or five years now. When the news came out recently that certain antacid medications can increase the risk of bone fractures, I decided all on my own (because I'm basically a doctor) to see if I could survive without it. I'm already at a high risk for developing osteoporosis because all of my different chemotherapy and radiation treatments have put me into premature menopause, so I thought it would be a good idea to minimize my risk of fractures even more. I am a calcium fiend, which helps with the bone density and breakage problem, but it's still a good idea to take steps to minimize the risk, right?

One long, horrible week of a burning esophagus and throat later and I realize that was a terrible idea. I'm back on the protonix, and I guess I'll just talk to my doctor about the whole acid reflux and bone breakage problem. That is why he went to medical school, right?

I have to admit I'm a little disappointed. I'm usually correct about medical stuff. It's a little bit of a blow for my honorary MD. Well, it was worth a try.

If you knew you were dying, what would you do? What would you regret?

2010-06-03T15:07:00.006-04:00

This is a topic I've thought quite a bit about in the past, and it's on my mind again since reading Theresa's incredible post. If you knew you had only a few weeks or months to live, what would you do? What would you regret not having done?

I do not consider this to be a morbid topic. I think we should all keep in mind the things we really want to do in our lives and with our lives in order to live our lives to the fullest and profit the most we can from being alive. It's like a bucket list, but with a bit of a more restricted time frame. Instead of "before I die" being a hazy end point, the end is in sight and you have a very restricted time frame for accomplishing things. This is why it behooves us all to take advantage of every opportunity that presents itself.

Thankfully, I don't think I'd have too many regrets. That is due in large part to my philosophy of taking advantage of every opportunity, of going after what I want, just taking advantage of life in general. That's what I did when I lived in France. First of all, I lived in France, I traveled to many of my top places to visit, I became pretty close to fluent in French, I lived totally independently and took care of all of my shit in a foreign language, I liked my job, made great friends, and of course ate wonderful food. I guess I might regret not having been there for a longer period of time, but the two years I spent in France were pretty fantastic. No complaints here.

I know I would regret not having been in a relationship with a man who really loved me. I can't seem to get guys to really like me and want to stick around for extended periods of time. I know I would be sad about that.

I think knowing what to do with your time left would be the hard part. Obviously the most important would be to let everyone I love know how I feel about them and to spend as much time with those people as possible. I would probably want to take a trip somewhere, either France or Northern Michigan, to say goodbye to those places and the people in France. I'd have to plan for the end - what I'd want to happen at my funeral, who should be invited, where I should be buried. Who I would give my stuff to. Writing goodbye letters, writing an announcement in French that my parents could send to the non-English speakers. I'd have to make a list of all of my passwords and sites to update for when I passed.

What would I want to accomplish though? Would I go crazy trying to read all the books I could or watch movies I'd never watched? I think I'd want to spend a lot of time outside, feeling the sunshine and wind on my face, breathing in fresh air. Would I want to write a book?

And how would it feel knowing that the end is approaching, that soon I wouldn't be able to do any of these things? Would I feel calm and be able to let go? Or would I fight it tooth and nail, struggling to stay alive and keep feeling and doing things?

I know I would struggle. I know I wouldn't be able to accept my doctor telling me I have no options left. I will fight and get treatment as long as I can draw breath to say I want more treatment. But I hope too that if it ever got to the point where there really wasn't anything left, that I really did have to say goodbye, that I would be able to let go with grace and dignity.

What about you? What would you regret not doing? What would you want to do in your last few months on Earth?

New look for summer

2010-06-02T11:42:00.003-04:00

The new picture is of Canet Plage, which is in the south of France near Perpignan, where I spent ten days as D's guest in her family's apartment two years ago. The apartment was right across the street from the beach and we had gorgeous weather the whole time I was there. Unfortunately I can only sit on a beach for a few days before I start going stir crazy so I was kind of bored a lot of the time, and because of my various medical issues I can't just sit out in the sun for hours, so the amount of time I could spend on the beach was restricted anyway, I was always sous parasol and wore kind of a lot of clothing. Despite being so close to Spain, Perpignan, Collioure, and Carcassone we only took a couple of day trips to other cute little towns in the area (Banyuls sur Mer and Villefranche de Conflent), but it was really nice of her to invite me in any case. It's never bad to spend part of your vacation on a beach in the south of France!

I wish my life were more "normal"

2010-05-30T23:38:00.003-04:00

In about ten days it will be six months since my transplant, and it's been about eight months since I found out I relapsed. Eight months since I put my life on hold, again, for the third time. The third time I've had to withdraw from classes, the third time my plans have been moved from the "in progress" box to the "indefinitely suspended" box. The third time I've found myself with nothing meaningful to fill my days - no work, no school, just medical stuff. Otherwise my time is mine and I can choose between internet, books, movies, TV, and the Wii for diversion.

Last time around I got completely stir crazy six months after my transplant and this time around it's the same thing. I'm ready for a change. This is why I don't really mind going to the hospital nearly every day of the week - it gives me something to do! People to interact with! A place to go!

I wish I were living the life of a "normal" almost 26 year old. Over the past six years the only time I felt somewhat "normal" was for a few months about five years ago, before I relapsed for the first time and had my first transplant, and the period from about two years ago until I relapsed in the fall. What do I mean by "normal?" Mostly not having my life be consumed by health issues all the time. Being able to go out and do things - grocery shopping, the post office, restaurants, which I can do now but since I'm not living on my own I don't have to. But mostly I mean the things that people in their 20s do - work, go to school, go out to bars, meet people, make friends, date, travel, have fun!

This is not to say that I've been miserable for the past six years. Obviously not. In fact I've made opportunities for myself that most people never have the balls to pursue, like living in France for two years. I just wish that my time in France didn't feel like an anomaly, like I had a break of two years bookended by years of treatment and hospitals and doctors. I feel so old. While most people my age only worry about what bar to go to this weekend and how to pick up a guy or girl, I worry about my blood tests and chemotherapy sessions and if I should make a living will or not (the answer is yes but I honestly don't know what I want to put in it. To be like Terri Schiavo or not?).

I just wish I could be more like everyone else. I would like my life to be less serious. It would be such a luxury to worry about homework or boy drama instead of my pulmonary function or getting rid of the leukemia in my CNS. To go out every night instead of spending every day at the hospital.

Someday?

Appreciation

2010-05-27T16:50:00.003-04:00

This week was an ECP week, so I spent the afternoon yesterday and today in the four chair ECP room getting treatment. Sitting across from me yesterday was a man who was so terribly emaciated and weak that he couldn't even get into and out of his chair by himself, someone had to lift him. Today a young woman sat across from me, a lung transplant recipient whose body had recently begun to reject her lungs. She's also on the list for a kidney transplant and may eventually have to get another lung transplant if they can't control the rejection reaction. She goes back and forth between three different hospitals in two states, is on a long list of medications, and did I mention she also has steroid-induced diabetes?

This afternoon I was angry. I wasn't angry at the other patients, I was angry at the majority of people in the world. You know, the ones who complain about everything - work, sleep patterns, internet problems, etc. The people who in all seriousness think their lives suck. We all know them, we all put up with their whining, we all nod along sympathetically as they continue to list the minor problems that make their life one big FML every single day. I looked at these poor people in front of me and was angry at the people in the world who live great lives and still think they have problems. Seriously? Seriously? Let's see, life threatening illness and the daily issues caused by it versus having homework or annoying coworkers or noisy neighbors. I wonder which one I would choose? People like that should get down on their knees five times a day and thank whatever power they believe in that they have their health, that their lives aren't like these people I met in ECP. Or like mine, for that matter. It makes me furious. It makes me furious that there are so many people who can't put things in perspective, shut their mouths, and be grateful for what they have. Do they really think their life is that hard? They should try spending one day like the lung transplant patient and then see how terrible their life looks. Why do we find it so hard to just appreciate what we have?

Then I calmed down, and I felt sorry for those people, those people who can't put their lives into perspective. I feel sorry for them because they will always be unhappy, because they can't see how good they have it. They look around them and all they see is the next thing that can go wrong, the next thing to complain about. They have no appreciation for life and so cannot fully live their lives the way someone who knows how precious every day is can live their life. They don't know how to take advantage of every good moment and appreciate how good life can be.

My friend T, Theresa, is dying of leukemia, as I shared with you a few weeks ago. This past weekend she posted a really beautiful guest blog post here. Theresa is the kind of friend everyone should have. Not only is she amazingly thoughtful, caring, beautiful and kind, but speaking with her makes me want to be a better person, and her words inspire me to be better. The world will be a little less bright when she is no longer in it. I hope that you will find the same inspiration in her words and life as I do.

Off the top of my head

2010-05-25T00:05:00.002-04:00

- had some friends from college visit this weekend. It was very nice to see them, but they definitely tired me out! We were always out and walking around and doing stuff. It was good to see that I've regained strength and can do these things without wanting to fall over, but by the time they left last night I was ready to veg.

- still processing the Lost series finale and deciding what I thought about it. Yes, I am a Lost fan. True to form the show of course left more questions than it answered, so many plotlines were just left hanging without any explanation, but a lot of elements of the ending were very satisfying. I like that they didn't force an "everything happens for a reason" type of ending on us, that would have ticked me off. We make our own reasons.

- over the course of the past few months I've realized that at least four people have defriended me on facebook. I don't really care, because none of them were ever close friends or anyone I am currently in touch with, but it kind of bothers me that they went through the trouble of deciding to remove me from their friend list. Do they have something against me or am I just too boring to stalk on facebook? I mean really, why would you go to the trouble of unfriending someone who is just sort of benignly on your friend list?

- we finally have sun! And now it's too hot! Just can't win when it comes to the weather.

To Life

2010-05-20T11:20:00.002-04:00

I had all of these ideas for posts in my head the past few days but didn't have time to write about them and now I've forgotten all of them! Let's see if I can remember some...

First good news is that it's finally sunny again here. The weather doesn't really get me down, but I do get tired of gray and rainy for weeks on end. The sun just brightens everything!

After my first transplant I didn't get readmitted to the hospital. Period. The first time I was readmitted in almost four years post first transplant was this past fall when I had gall stones and we found out that I had relapsed. That is basically unheard of for bone marrow transplant patients. Everyone gets readmitted for something. This time I'm less than six months out and already have two non-serious, short readmissions under my belt. What's the difference? Well, the first time around for the first year after transplant I literally only left my house to go to the doctor and take walks outside. Only a few visitors, no stores, no restaurants, no nothing. I had a different doctor and was at a different cancer center, and he had very strict rules and scared me into submission. At the time I really thought that it was better to be bored OUT OF MY MIND for a year than to risk an infection that could kill me. This time around, I know how miserable that kind of life is and refuse to do that to myself again.

The medical details were different too; I was still on fair amount of immunosuppressants at this time four years ago (actually didn't get off of them until I relapsed) and already after this transplant I'm off all immunosuppressive medication. Your immune system works better when you aren't layering medications on top to stop it from working. Amazing, huh? Also the philosophy at my current hospital and of my current care team is very different. They really encouraged me to go out and do things once I was post day 100. I think a lot of that is because I'm being seen in pediatric care now (young adults still count as peds for transplant at this center) and of course it would be completely impossible to keep young children inside for a year. In general the pediatric view of care, from what I've encountered, takes quality of life into account much more than the adult teams do for many different aspects of care. They realize that it's good for the spirit to be out and about, as long as you're being careful and not doing anything too crazy. For the amount I've been doing, it's pretty amazing that I haven't been back in the hospital more often. I've been going to trivia night at a bar since they went smoke free on May 1st, I've been going out to a cafe for my French conversation group nearly every week, last night I was out at a fundraising event for a local cancer support community, I'm seeing friends, going shopping, going to restaurants... it's amazing compared to the first time around! And my spirit is noticeably better. I remember four years ago after my first transplant around this time I was miserably bored and trying to force myself to be content with the life I had. I felt so uncertain about my future and could barely think ahead a few days because I was so focused on my health, living by my blood counts, hoping to dodge the next bullet. I couldn't envision anything interesting ever happening to me again. It was a long, boring, uneventful life lived three or four days at a time. On good days, maybe a week at a time. I was trying to just be content with what I had, which was uneventful nothingness and being unable to imagine a different future. I felt dead on the inside.

And now I'm out, I'm doing things, I'm seeing people, I have plans, and I enjoy thinking long into the future and thinking about things I might plan for the future. Of course I have good days and bad days, but I'm so much happier in general than I was four years ago at this time. And on the bad days I can go buy myself something to improve my mood.

I discovered towards the end of my year of enforced solitude that in order to feel alive, to feel as though all this shitty treatment I've been through was worth it, I have to feel emotions and I have to be a part of life. I'm sure some people look at me and think I'm a little extreme and crazy in my absolute passion to live and do things and be part of life, but that's how I'm happy. I am not happy giving up things and renouncing life and trying to be content with what I have. I always want more, I always want to go somewhere new, do something new, feel more, experience more. That is what life is all about! Life is meant to be lived, not merely existed, miserably trodding through like a drudge.

So I dream ahead. I make plans and alternate plans and alternate alternate plans. I think far in advance - to the end of the month, to the summer, to the fall, to possibly applying to go back to France again, to maybe enrolling in school, to places I want to travel, to trips I will take. I may not be able to do these things yet, but someday I'll be free again, and I want to be prepared. In the meantime, it makes me happy to plan and imagine a better future.

So to close today, some quotes:

"Feel, feel I say - feel for all you're worth, and even if it half kills you, for that is the only way to live, especially to live at this terrible pressure, and the only way to honour and celebrate these admirable beings who are our pride and our inspiration." In letters to friends, again and again he urges them to feel. Feeling would stir up empathy and would remind them that life was worth living.

"Live all you can; it's a mistake not to. It doesn't so much matter what you do in particular so long as you have your life. If you haven't had that what have you had?"

Both from Reading Lolita in Tehran by Azar Nafisi

And finally, my favorite quote:

"But I can't give up wishing," said Philip, impatiently. "It seems to me we can never give up longing and wishing while we are thoroughly alive. There are certain things we feel to be beautiful and good, and we must hunger after them. How can we ever be satisfied without them until our feelings are deadened?"
George Eliot, The Mill on the Floss

P.S. I might be a little crazy, but I like my crazy.

Sprung!

2010-05-16T00:02:00.002-04:00

Luckily I didn't have any positive cultures, my symptoms were clearly cold-like, I didn't run any more fevers, and my doctor saw reason and let me out this morning about 12 hours shy of the full 72 hours. I'm back at home. Let's hope I don't have to go back again, even though I like visiting with everyone up there. Hopefully the weather will be nice tomorrow so that I can enjoy being out!

I just watched a fabulous movie tonight, Penelope. It's a really adorable story about a girl born to very wealthy family, but because of a curse put on her family, she is born with a pig nose and ears. To hide their shame, her family has kept her locked away in the house her whole life. In order to break the curse, she has to marry someone from another wealthy family. It's a very nice movie, beautifully filmed, with a great message about loving and accepting yourself despite any perceived flaws. I really related to the character of Penelope. I highly recommend it. Anyone else seen it?

Jinx!

2010-05-13T16:33:00.002-04:00

.... and then I ran a fever and bought myself three days in the hospital!

Last night I started running a fever. The rule post-transplant is if you run a fever of 100.5 or higher you will get admitted to start administering IV antibiotics and whatever else. The danger is that the brand new immune system may be too weak to fight off an infection so they want to jump on any problems right away. So I spent the entire night in the ER - sorry, emergency department - finally got a room on the transplant floor at 6 AM, slept for a few hours, and am just hanging out here getting IV antibiotics. Of course I'm not running fevers anymore, and my symptoms are all consistent with a simple cold. But the rules are you have to stay in the hospital until you've had negative cultures for 72 hours and no fever for 24, so I may end up spending my weekend here. I say may because they are hard up for rooms right now and it doesn't make much sense to waste a room on someone with a cold, especially because I live very close to the hospital and can easily come back if my fevers return. We'll see.

I definitely jinxed myself though because I came up to the floor to visit the nurses last week, and here I am, back as an impatient, able to visit with them as much as I want!

Finally, some good news!

2010-05-12T18:11:00.002-04:00

I was scheduled to have more intrathecal chemotherapy (chemo injected into the spinal fluid) on Monday, but my doctor decided to hold off on the chemo and just check the spinal fluid for leukemia. Chemo lowers my white blood cell count, and he doesn't want me to run super low counts, so he was hoping we'd be able to hold chemo for another week if the spinal fluid came back clear. Otherwise I would have gotten more chemo later this week.

Good news: only 1 white blood cell per mm3, and none of them were leukemia cells!

Chemo is rescheduled for next Monday now. Why do I have such annoying cancer? Seriously, it keeps coming back to bite me, but then it dies off quickly. The dying off quickly is good, but can't they just stay away in the first place?

It turned out to be a good thing that I had so many problems with my platelets for so many months. The reason I had a lumbar puncture when I did, at the end of April, rather than the end of March, like I was supposed to, is that my platelets were low and they had trouble getting any fluid out. When I finally had the LP in April, we caught the leukemia really, really early when there were very few cells around. In March they likely wouldn't have seen anything, and I wouldn't have been scheduled for another LP until June at my six month post transplant check up, by which time I would have been FOL - full of leukemia.

I am a lucky girl.

My Mom

2010-05-09T20:53:00.002-04:00

Mother's Day calls for a special post about my mom. My mom and I have a great relationship. I know that I can tell her anything and she'll always listen and give good advice without judging, she has always been there for me, and although it was very hard for her while I lived in France for two years, she never complained and supported me when I went back for a second year.

My mom is a remarkable woman. She struggled against a lot of sexist attitudes in her desire to be a scientist and has been remarkably successful. She kept her maiden name despite societal pressure to change it and has always been very strong her feminist viewpoint. She has fought tooth and nail for all of her kids to succeed in whatever they wanted to do.

All of this would be amazing in anyone, and then you add on top of that the fact that for the past six years one of her children has been fighting a life threatening illness, and she becomes even more amazing. When I was first diagnosed she stayed in the hospital with me every night during my month-long hospital stay. She moved across the country with me to get my first transplant, living apart from my dad for four months, and somehow their marriage is stronger than ever today. Because I have near constant immune problems she has changed the way she cooks and cleans just for me, just to keep me safe. She goes to all of my appointments and procedures and always asks good questions to make sure everything is working the way it is supposed to. And did I mention that the type of research she does is on cancer, and types of drugs she works with (nucleoside analogs) are the drugs they use for my type of leukemia? I can't imagine what a nightmare it must be to know exactly what can go wrong with your kid, but my mom believes that knowledge is power and that makes her the most powerful mom in the cancer center.

I love my mom, and I can never show her enough how much she means to me and how much I look up to her and hope to be just like her someday.